Everyone loves a story of triumph; the story where a person, having endured every imaginable obstacle, perseveres to the finish….against all odds.

This is our story of triumph.

Eight and a half years ago, while I was in the hospital for severe pre-term labor with Judson, petrified that our child was going to arrive precariously early, Drake was at UCLA taking his written and oral competency exams for his PhD in History of Religions.  Despite the intense stress and fear we were facing over our unborn baby, Drake successfully passed his exams and advanced to candidacy.  Thereafter, the last step to becoming Dr. Levasheff was to write his dissertation. 

In general, the statistics for completing a PhD are not favorable.  The Council of Graduate Schools reports that only 47% of male doctoral students in Humanities actually complete their degree once they’ve started—less than half.  But little did we know, when Drake advanced to candidacy, how the odds would become almost completely stacked against him.

In the season that immediately followed his exams, we faced multiple stresses and transitions: Our Judson was born (amazingly, he was full-term).  I stopped working.  Drake started a new job.  Six months later Drake was laid off from that job.  We weathered a few months of unemployment.  Drake started another new job.  I discovered I was pregnant with our second child.  We moved to a new area, which entailed numerous changes.  And soon thereafter, Jessie arrived.  As you can imagine, such instability significantly affected Drake’s capacity to engage his dissertation.

Then, a few months later, we discovered our beloved boy was terminally ill. 

I remember just weeks before Jud passed away, while we were lying in bed, Drake was staring up at the ceiling, his chest heaving as he wept bitterly, tears rolling down the side of his face.   With despair he wondered aloud, "If Judson dies, I don't know how I'll make it."  He began lamenting many of the potential challenges.  At the top of his list he shared, "It will be impossible to finish my dissertation.  I don't know how I'll ever be able to complete my degree."

Judson died, and we became disabled—internally disabled by our sorrow and loss.  Engaging even the smallest things in life took on a new challenge.  And for Drake, completing his dissertation felt like being part way up Mount Everest and suddenly losing his legs…climbing to the top seemed an impossible task.

Fast forward.

I vividly recall where we were sitting in October 2010 when Drake looked me in the eye, resolute and determined, and declared, “I’m gonna do it!  I’m gonna climb this mountain.  I’m gonna finish my degree and I’m gonna do it in honor of Judson!”

Fast forward again.

Indeed, Drake has done just that!  He has climbed our Mount Everest!  Having endured unimaginable obstacles, even in the home stretch—other trying circumstances including a severe car accident—but Drake has reached the precipice!  The Dr. before his name is like his flag waving at the top of the mountain, a symbol of resilience and strength and a tribute to our son.

This journey to earn his PhD began twelve years ago (yes, you read that correctly—twelve!).  When we set out on this path we didn’t have kids, didn’t expect to have children, and certainly never could have imagined what would befall our family.  But at the time, we felt strongly that a doctoral degree would be a great compliment to Drake’s gifts. Now we see that it has also beautifully demonstrated his character; Drake has modeled diligence, fortitude, perseverance, passion, sacrifice and honor by persisting toward the goal we had set together many years ago—and all of it ultimately points to God’s sustaining grace.

It seems fitting that Drake had his doctoral degree conferred on June 13th, exactly six years to-the-date that our horrific journey with Judson began.  I am so incredibly proud of my Dr. Drake…who has triumphed...against all odds!

COMMENTS     Author: Christina

The other day as I was washing dishes alone in the house, I found myself shouting at God, “I don’t feel your love!” In a volcanic outburst, I exclaimed with hot tears of brokenness, “I know you’re loving.  I trust that you’re loving. But right now I don’t feel your love!  Where are you?  Why does life seem unusually hard?  Why is it so difficult for me to grasp your love?  Why do you feel really distant?”  My voice cracked as my cries bounced around the walls of our kitchen.  Finally, exasperated by my tears, I flopped onto the couch, leaving the dirty dishes behind.

I trust I’m not the only person who periodically has outbursts with God, just as one might have with a spouse when they're feeling especially wounded.  On this particular day, I felt desperate for God to somehow reach down from heaven and touch me in my broken places.

As I lay on the couch, my chest still heaving from the intensity of my explosive conversation with God, I reached for my phone, wanting to distract myself from my feelings.  Noticing a notification for a new email message, I opened my inbox and discovered this note:

Dear Lord Jesus, I pray for Christina today, that she will feel the embrace of your arms. Our savior, please let her feel your presence and that your promise is true for her, that you will be with her every day until the end of the world…Please show her, that you are not distant to how she feels, but so close and so concerned. I remember a video that showed Drake describing Judson as "SO loving"... and if Drake had spoken about you, Jesus, he would surely have said "SO caring about Christina" with the same intensity. But sometimes we need to feel that, Lord, our souls are hungry to feel your touch. Please let Christina have such encounters with you, her healer, her shepherd, in the time to come, and today. Please encourage her with your word today. It may be the tiniest word that sustains her, let her find it…Can you please speak your love "louder" into Christina's heart therefore so that her heart will be filled with your comfort? Please…  Amen.

Love from Germany

This person in Germany, whom I’ve never met, became God’s tool to speak his love directly to my heart—at just the right time—in a sweet, unexpected way.

He hears.  He is present.  He loves us.  Even when it feels like our prayers and cries are just bouncing around the walls of our home.

COMMENTS      Author: Christina

By no fault of his own, Drake was in a severe car accident weeks ago.  We are so grateful he is okay, having walked away with the ongoing aches and pains expected from a serious crash but nothing grave or life-threatening.  However, the car was totaled.

We have been confronted with many challenges associated with the accident, but I’ve been particularly struck by how much I’ve found myself mourning the loss of the car.

We bought our 1999 Mitsubishi Galant just a few weeks after Judson was born.  It was the car he filled with his chatter from the backseat.  It was the car that Judson regularly pretended to drive.  It was in that car that he’d ask me to play his favorite songs over and over and over again and would sing them at the top of his lungs.  It was the car that took him to and from his doctors’ appointments and the vehicle he threw-up in on his way home from his MRI in Los Angeles.  That little black car was part of my life with my son—having been filled with O’s (Cheerios), sand, trash, and stains by his hands.  I could picture Judson in that car.

The car is gone. I’ve grieved it.

But the sadness is not merely sentiment (like I feel over things connected to Jessie), or an unhealthy connection to an inanimate object, it’s that losing the car reflects greater separation from my life with my boy, from the togetherness we shared.  Over time we’ve had to let go of so much tangible “stuff” that tied us to our son.  It’s hard.  Whereas sometimes we’ve been able to choose when to let go of things, other times we've been forced to let go unexpectedly, like in this case, which carries more of a searing pain (read about the bunk bed and our home).

I continue to feel the ache of the increasing distance from my life lived with Judson.  But I am simultaneously aware that moving farther from our earthly time together concurrently moves me closer toward our unending, heavenly life together.

COMMENTS     Author: Christina

This last weekend Jessie participated in The OC Kids Run in conjunction with the Orange County Marathon.  Students from her school have been training for the run these last couple months, jogging a couple times a week to equal approximately 25 miles.  They then complete their “marathon” by running the 26th mile in a timed competition.

Jessie did great and we were very proud of her, but something else stood out to us as we watched her race. Twice on the course we had the chance to root her on as she ran past.  Both times she was in a slow jog, her passion for the run slowly fading as she showed signs of weariness.  But when she heard our cheering voices, and caught a glimpse of us enthusiastically applauding her efforts, a smile swept across her face as she exploded with speed and power, running rapidly toward the finish; seeing our support infused her with fresh strength, energy, and zeal to keep going.

It reminded us how much we all need people cheering us on, encouraging us to keep going when we’re weary, losing focus, feeling defeated, or we’re tempted to give up.  Especially when facing hardship and pain everything can look bleak, but having people who believe in us standing on the sidelines expressing their support, infuses us with renewed strength and heartens us to keep going.

Who in your life might need you to cheer them on today?

COMMENTS      Author: Christina

On my stroll around our nearby lake this morning, my heart leapt at the signs of spring.  New blossoms covered the trees, birds chirped with wild enthusiasm, and budding flowers lined my path.  Out of a cold, bleak, and gloomy winter, life emerges…

Spring always comes.

Life can feel cold, bleak, and gloomy…

But wait for spring. 

“Then he gives the command and it all melts;
he breathes on winter—suddenly it’s spring!”
--The Message, Psalm 147:18 

Spring will come.

COMMENTS     Author: Christina

Most of Judson’s belongings now sit in a storage bin in our garage.  It’d been a couple years since I opened the plastic tub to engage its contents.  I use the word engage because the items contained therein cannot simply be browsed; they provoke, stir, and kick up memories, which can be both beautiful and painful all at once.  It requires a willingness to “go there.”

On Nov. 7th, a day of remembering, I retrieved a few of Judson’s favorite things from the tote: his Silly Sally book, his white Chevy Blazer truck, and his fleece basketball blanket.  I didn’t go digging through the bin, these items were sitting on top, and they were just what I needed—a couple things Judson had held, loved, and played with to ignite my memories.

I carried them with me throughout the day, reading the book a couple times, inspecting all the dirt and grime the Chevy Blazer had accumulated from life with my boy, and snuggling the blanket that had brought Jud comfort throughout his life.

The next day, I put the book and truck back in the large container…but I couldn't part with his blanket again.  I have been sleeping with Jud’s basketball fleece almost every night since—smelling it, cuddling it, and picturing the small hands that received comfort from it.

The longings in my heart for my son don’t change; they just find expression in new shape and form over time, most recently expressed in my inability to part with his blanket. 

COMMENTS      Author: Christina

How easily I lose heart. 

I get discouraged by the bumps and bruises of life. I see looming troubles and hope escapes me.  I experience pain and it clouds my view of God’s grace.  I get weary under a heavy load.  I encounter new struggles and somehow forget God’s faithfulness in previous hardship.

I lose heart.

I woke this morning, unable to pull myself out of bed, disabled by hopelessness.  Everything felt dim.  I didn’t want to get up.  I didn’t want to face the day.  I didn’t want to go about my routine as if all was well… 

So I didn’t.  I just silenced my alarm, snuggled back under the warmth of my blankets and cried…moaned…bawled…and wept…until I was so weary that I fell back asleep.

When I awoke, a song of expectation was running through my mind—an encouragement to be strong and never give up hope, that God has a plan for me and I don’t need to live life in fear.  My tears flowed again…but this time they were hope-filled tears rather than the ones of hopelessness that preceded.

God knows how easily his people lose heart.  He knows that we get discouraged.  Years ago, when his beloved children in Corinth were growing weary and disheartened, he reminded them, and us, not to lose heart because he is renewing us day by day.  Ultimately our troubles are light and momentary, though they definitely don’t seem that way, considering the glorious life that awaits us in his presence (1 Corinthians 4:16-18).

That means that my sweet boy who suffered heinously for several months looks back on that time and considers it nothing in view of his life now.  I get choked up at the thought.

How then can I not fix my eyes on what is unseen?!!?  For although that which I see can feel bleak and daunting, it is temporary.  That which I cannot see is eternal.  In that I take heart.

COMMENTS     Author: Christina

As a symbol of your precious years,
Amidst a celebration marked with tears,
Eight balloons made an ascent,
Gliding through the firmament.

The heavens enveloped balloons of white,
Each swiftly unseen, though still in flight.
But the crimson two colored the sky,
Floating distinctly, ever so high.

Much like your years on earth, though few,
They marked this world, gliding through.
Your time absorbed by heaven is veiled,
No longer seen, but life prevails.

COMMENTS     Author: Christina

On Christmas Eve we arrived with family at Judson’s gravesite armed with lawn chairs, blankets, decorations, and balloons—the usual fare to celebrate our boy’s birthday.

But that’s what got to me most this year…it was the usual fare.  It was the same.  No new memories of our son.  No little boy to marvel at or consider his growth over the year. Nobody to receive our gifts of love.  Our experience was the same as it had been the year before, and the year before that.  For six years now, we have celebrated Judson’s birthday in his absence…at a gravesite.  

I highly value honoring our little man’s life in these ways, but it especially hurt me this year as I walked up to the plot of land marked with his sweet smile and vibrant eyes, how Jud’s 8th birthday looked the same as his 7th and 6th and 5th.  And his 18th, 21st, and 30th will be the same too.

We have our typical way of celebrating and yet there is nothing typical about it.  

COMMENTS     Author: Christina

The other night as I was tucking Jessie in bed, she expressed a desire to specifically pray for Judson and proceeded to pour out her heart to God on behalf of her brother.

Dear Lord... I pray that Jud could have lots of fun in heaven and that he could get many kisses from you under the mistletoe.  Please give him four kisses from me and one hug.  Please let him have a wonderful birthday in heaven.  I also pray that he could have a really big stocking for Christmas and that it would be filled with at least four toys.  I hope he gets everything that he really wants and that Santa brings all the kids in heaven what they ask for.  Please let him know that I miss him.  Amen.

As I heard her pray, her precious heart attempting to make sense of Judson's life in heaven, my heart melted at her longing for her brother to experience all the joys she has here on earth.  But what stood out to me even more was how much she recognizes Judson is alive.

Her childlike understanding of heaven may have theological gaps and errors but it beautifully expresses so much truth.  Judson is vibrant and whole.  He is embraced and completely loved by God, face-to-face with his Savior.  He is able to experience the joys of life, like those on earth, yet in all the richness for which our souls can only long.   Moreover, we can continue to engage relationship with him, through Jesus, in anticipation of our reunion.

Judson's stocking here on earth may remain empty this season, but his life in heaven is completely full.

COMMENTS     Author: Christina

I fell into a heap of tears this morning, experiencing the full extent of my weakness, fragility, and vulnerability.

Then I began to think of the numerous radio interviews I've been doing recently, speaking of hope and God's work in and through my pain.  I started wondering what those listeners might think if they heard my words and then saw me in such a feeble state.  Would it seem duplicitous?

My heart was gently reminded that it's not about being strong...it's about being submitted.  God is not asking me for strength, he's asking me to surrender.

So today I boast of my frailty in hopes that His power might be perfected in my weakness (1 Corinthians 12:9).

COMMENTS     Author: Christina

There is a gentleman who lives in our area that I regularly see out walking the neighborhood.  He always catches my eye.  Using a quad cane, he ever-so-slowly takes one very small step after another, inching along with purpose and determination.  He appears to be a victim of a stroke, half his body paralyzed, but obviously working very hard to rehabilitate.

When I see him, I feel infused with strength in my own struggles.

Yesterday I was riding my bike when I glanced to the other side of the street and noticed this man was on his hands and knees, dried grass covering his back, trying to reach for his cane on the concrete beside him.  "Do you need help?" I hollered over, my voice cracking as I assessed the situation, realizing he had fallen.

"Yes, please," he humbly responded with a garbled voice.

I raced over to his side, put my arms around him, feeling the heat of his broken body and tried to help him rise.  He couldn't get up.

"Try the other side," he recommended with slurred speech.

I quickly moved to his other side, put my right shoulder under him as I pulled his arm around me and slowly lifted him up.  He stabled himself with his cane, once again standing.  I began to dust the dried grass off his back.  He looked at me and smiled, half his face paralyzed, "Thank you."

"Of course," I said smiling back at him.

"I've never fallen before," he continued, a little sheepish about his stumble.

"Sir, I see you walking all the time.  You inspire me.  You inspire me so much!"

His eyes sparkled while his half-smile grew. 

"I'm Christina.  What's your name?" I asked.

"Hort."

As we were chatting a woman drove up in her car, rolled down the window and called out to Hort, "I saw you fall.  Do you want me to drive you somewhere?"

"No, thank you," he responded.

I piped in, proud of him, "He walks everywhere.  He's just gonna keep walkin'!"

She drove off and I gave Hort a pat on the back, "It was such a pleasure to meet you.  Enjoy the rest of your walk."

As I hopped back on my bike and rode away, tears pooled in my eyes.  The resilience, determination, and strength-of-spirit in my new friend were a reminder to keep walking.  Even when I'm just inching along in my brokenness, keep walking.  When I stumble or fall, keep walking.

Don't give up.  Keep walking.

COMMENTS     Author: Christina  

Dear Judson...

For awhile it felt like just yesterday that I had been snuggling you, running my fingers through your hair, kissing you to pieces, and sharing the simple joys of life with you.  But those experiences are so distant from me now; everything has changed since the day you left my arms five years ago.

It is devastating to realize how foreign the actual experience of embracing you feels.  And yet, you remain principal to my very existence.  I hold you close because you are my boy.  But I also hold you tightly because God continues to use you to help me see him, because you give me more understanding of my purpose, and because your voice compels me to speak.

As I continue to hold you closely, God has graciously been expanding your legacy.  He is using your voice.  He is revealing glimpses of his redemptive power through your suffering.  He is opening hearts and changing lives out of your faithfulness as a little child.  God is clearly at work through your life and we are humbled to be a part.  I am so incredibly proud of you!

But as your legacy grows, I get concerned that you might simply become an idea, a sweet concept, or just a cause to support.  I also fear that your personhood might get lost or forgotten with time.  Please, please forgive me if others ever treat your memory thoughtlessly or without respect.  As your mama, who wants desperately to protect you, there is little that breaks my heart more.  I am so sorry!  

However, please also know that your personhood will never be lost or forgotten with your dad, sister, and me.  You are our fourth.  You complete our family.  You are an integral part of us.  We are not whole without you.

I hope you see all the cards Jessie writes to you, the gifts she makes for you, the ceremonies she puts together for you, the games she creates to include you.  Her actions reflect all our hearts--you are precious to us, a super-loved member of our family and considered in all we do.  We miss you so much, Juddy! 

Five years ago my heart was shattered when you left.  It is still shattered.

Five years ago your body was broken before you left.  It is no longer broken.

I can't wait for the day when my shattered heart will be whole just as your broken body is now whole. 

My soul yearns with love and longing, Bud Bud.

With all my heart,
Mommy

Comments

As I was sitting in my Starbucks office, typing away on my laptop, a sweet woman tapped me on the shoulder and, pointing at my necklace, asked, "Is that your son?"

"Yes," I smiled, leaving it at that.

"Is that his age now or was that picture taken awhile ago?"

Taking a deep breath, always unsure how someone might respond, "Well, he actually passed away."

Tears welled up in her eyes.

"I lost my daughter when she was 3 years old.  She would be 53."  A tear trickled down her cheek.  "It's been 50 years and I can still grieve like it was yesterday."

Touching her hand with tears now filling my eyes, "Oh how I pray you have the gift of seeing her again."

Putting her other hand on top of mine with a smile that spoke volumes, "It won't be long now."

Hope.

Author: Christina

We'd love to hear your thoughts!

"Do you still think about Judson much?" my neighbor, whom I've only known for a few months, recently inquired.

I responded with a curious look, wondering what prompted her question, but touched she was thinking about my boy.

She continued, "The only person I've lost in my life is my grandma.  It was a couple years ago and she rarely comes to mind."

I realized she was sweetly trying to grasp my grief, but had limited experience of loss herself.  "I understand," I replied, " I was actually present when both of my grandmas passed away.  I love them very much, but they don't come to mind for me very often either. "

Her son, born just a few months after Judson, was playing nearby.

"It's different with Judson.  Very different.  I think about him all the time.  Our kids are part of us; just as he was a central part of my life when he was alive, even in death my mind continues to connect Jud to my current experiences.  Whether it be remembering him, imagining what life might be, or grieving what is, he comes to mind all the time.  All the time.  Although he is not physically present in my daily living, he's still a central part of my thought-life.  Does that make sense?"

This time, she responded with a curious look.  I paused, trying to think of a way to help her understand.

"Consider how much you are connected to your kids right now.  They are integrated in one way or another to most areas of your life," nodding toward her son I continued, "Imagine if something happened..."

"...I can't.  I can't imagine that!  I just can't!" she exclaimed, waving her hands in the air.

"I'm sorry.  I understand why you wouldn't want to imagine that," I affirmed.

Meanwhile my heart was torn by the reality that I not only have to consider such an awful possibility, I live with the actuality of it every single moment.

Author: Christina

We'd love to hear your thoughts!

It was quite a surreal moment when we were declared tournament champions of The American Bible Challenge! 

If you had asked six months ago how we thought God might choose to expand our ministry and help fund our cause, I can assure you we would never have imagined him using a Bible game show.  His ways are truly mysterious.

In that manner, we are so aware of the gift we've been given.  Though we definitely had a good team, there were multiple circumstances in the tournament that swung in our favor when they could have easily gone a different direction, or we were given questions we could readily answer whereas different questions might have been more difficult.

Other teams competing were very worthy competitors for the championship title, with God-honoring causes at play, but for some reason God chose to elevate our team; we are humbled by that fact. God has poured out his grace upon us in this circumstance.  In fact, we had originally chosen not to audition for the show when given the opportunity, declining more than once, but the door kept opening wider and wider until we could no longer refuse to walk through it.

We are glad we finally stepped into the unknown, despite questions, vulnerabilities, and reservations, and we're so grateful God was pleased to bless in this way, giving us the honor of seeing him expand his work through Judson's life and legacy.

The victory is sweet--especially sweet because it reflects God's unexpected grace...through a game show nonetheless! 

Author: Christina

We'd love to hear your thoughts!

I was watching a TV show online last night when a 30-second commercial came out of nowhere and punched me in the gut.

A little, diaper-clad baby with beautiful, bare skin was laughing and giggling with delight as she lay on her back playing with her feet.  A deep voice began to narrate, "You will have your child for the rest of your life, but..."

Ugh!  I didn't hear another word.  Disarmed and tender, I impulsively shouted at the screen, "Presumptive Reality!!"

Then I sat in silence, unaware of what product was being touted on the screen, just disturbed by the premise.

For most people in the United States, that presumptive reality will prove true... they will have their children for the rest of their lives.  But I also know dozens and dozens of parents who do not or will not have that privilege.

I presumed I would always have Judson.  I don't.  

I don't still have Jud because we live in a fallen world.  Parents don't always get to enjoy their children for the rest of their lives.  Across the globe moms and dads are outliving their kids, and in certain countries it is devastatingly common.  This is the true reality.  Troubles and suffering abound--in multiple ways.

Yet ironically, because of a Son that died, even as his mother wept nearby, we can have hope in this broken world.  We can take heart that the wrongs will be made right...

And that's not a presumptive reality!

 Author: Christina

We'd love to hear your thoughts.

"I show Jud's video all the time to doctors and researchers.  It has such an incredible impact!  I call the later onset form of Krabbe...Judson's disease.  I wouldn't be surprised if one day it is known as such."
-- Dr. Patti Duffner, Hunter James Kelly Research Institute

One of the ways Judson's Legacy is committed to offering hope in suffering is by helping to give Krabbe kids a chance at life on earth.  Dr. Patti Duffner is one of the leading researchers for Krabbe disease and the founding Clinical Director for the Hunter James Kelly Research Institute.  As we are leading a campaign to build a Myelin Repair Lab at the HJKRI, we thought it would be helpful to hear directly from Dr. Duffner about the impact these monies can have on the lives of future children.

What would a breakthrough in myelin repair research mean for children with Krabbe disease and other leukodystrophies?

Currently the only treatment for Krabbe Disease (KD) is bone marrow transplantation (typically using umbilical cord blood) which provides GALC (the enzyme missing in patients with KD) to the nervous system.  However, supplying the enzyme does not help patients who already have damage to the myelin--white matter of the brain.  To effectively treat most patients with KD will require repair of the damaged white matter.  Supplying the deficient enzyme plus repairing the damaged white matter will provide a true “cure” for many patients.

What is the progress you've seen in Krabbe Disease research over the last decade?

Over the past decade, interest in KD has grown in both the basic science and clinical research communities.  Studies on enzyme replacement  and  gene therapy,  with and without bone marrow transplantation (Hematopoietic Cell  Transplantation--HCT), have significantly improved survivals in animal models of KD.  Transplants in patients with Krabbe disease have become increasingly accepted, although  limitations of the procedure have also been recognized as it is only effective in patients with KD who have not yet developed symptoms.  Therefore, newborn screening for KD is so important; it has the potential of identifying infants with Krabbe disease prior to symptom onset, when they can benefit from HCT.  Newborn screening has also broadened our understanding of this complex disease.

Prior to leading HJKRI, you had a very successful career in research related to brain cancer.  What made you decide to move into Krabbe research?

For 30 years, my focus in child neurology was on brain tumors in children (particularly in babies  and very young children) as well as the long term effects of radiation and chemotherapy.   When newborn screening was proposed in New York state, I realized that some of the expertise that I had gained in dealing with rare diseases in neuro-oncology could potentially be helpful in developing an approach to newborn screening.   This led to a NY statewide multidisciplinary Krabbe consortium and so much more.

Please discuss the impact Judson has had on your research...and other researchers.

In the 1970’s I wrote an article on “Sudden Blindness in Children."  Krabbe disease was not mentioned. Judson was the first child I encountered who  presented with blindness as one of his first symptoms.  Because of his videos, I  felt as if I knew him personally. (As many times as I’ve seen that video—I still cry).  Every time I speak to groups of doctors, I play his video and/or talk about Judson’s life so the physicians can better understand the course of the disease, particularly the rapidity of disease progression.  Several children have been diagnosed with the later onset form of KD because doctors in the audience remembered Judson’s story and were therefore able to make the diagnosis in their own patients.

Is there anything else you think would be helpful for the general public to understand about Krabbe & leukodystrophy research?

Krabbe disease is very rare, but lessons learned from this disease can be important in treating other similar diseases.  Successes in the delivery of enzyme replacement therapy will help children and adults with a host of other leukodystrophies and lysosomal storage disorders,  while advances  in myelin repair will help not only patients with Krabbe and other leukodystrophies but patients with multiple sclerosis, stroke and other diseases that damage  white matter of the brain.

Will you partner with us to give Krabbe kids a chance at life on earth?
Click here to donate to our Myelin Repair Lab campaign.

So why are we currently running a campaign to raise $20,000 to build a Myelin Repair Lab at the Hunter James Kelly Research Institute?

Of course, part of the mission of Judson's Legacy is to raise money to treat and cure Krabbe Disease.  But beyond the obvious need for funding rare-disease-research, why does our organization, a ministry of God's comfort and compassion, deem it so important? 

The answer for us is simple: we want to give tangible expression to God's deep love for those who are suffering.  This kind of compassion was at the heart of Jesus’ ministry.  His words in Luke 4 poignantly express this perspective:

“The Spirit of the Lord is on me, because he has anointed me to proclaim good news to the poor. He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free, to proclaim the year of the Lord’s favor.”

Jesus demonstrates God’s great compassion for the weak and infirmed.  That this is Jesus’ first preaching in Luke’s gospel indicates that such actions are at the heart of His mission.  Luke 4 confirms that His purpose had a strong physical dimension in addition to the spiritual one.

Judson’s Legacy is about both sharing the hope of heaven AND giving Krabbe kids a chance at life on earth.  We want to proclaim and demonstrate the fullness of the Gospel for the present age and the age to come.  Before Jesus died and rose, He brought good news to the poor, sight to the blind, and freedom to the oppressed; we want to be about the same thing.

Having seen how Krabbe disease heinously robs and destroys children and families, we’re committed to supporting medical research that could eventually right this wrong; if we can repair the myelin, we can bring healing to countless children affected by Krabbe and other de-myelinating diseases.  We’re supporting scientific research that their sight will be restored and they will be freed from this bondage!

So this leads to our current campaign to fund a Myelin Repair Lab at the Hunter James Kelly Research Institute; we see a rich opportunity to aid the research and make a difference.  God has tremendous compassion for those who suffer and we want to follow in Jesus’ steps to bring good news, sight to the blind, and freedom to the oppressed.

We hope you'll join us.

Author: Drake

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This Thursday, Aug. 30th, Drake and I, along with our friend Dean, will be competing as Team Judson's Legacy on The American Bible Challenge game show airing on GSN (Game Show Network).

Anyone who knows me is aware of my tendency toward disassociating myself from Americanized Christian culture, especially as it's portrayed in the media.  All too often what we see about believers in entertainment or the news is either antithetical to the Gospel, lacks love, is void of depth, or is somewhat tacky.

So it stands to reason we were hesitant, at first, to get involved in The American Bible Challenge.  Seeing as it was a new series, we were walking into unknown territory , uncertain how a secular network would handle a show about the Bible.  Did we want to publicly tie ourselves to something that might further marginalize Christians, potentially be disrespectful to faith, or give mainstream media more fodder for disparaging believers?

Having Jeff Foxworthy as the host certainly brought validity to the show, making it more appealing, but at the time, we knew little about Jeff--other than his redneck jokes and his skill as host of "Are you Smarter than a Fifth Grader?"  Is he a man of faith?  Would he be respectful of Scripture?  Could he appropriately walk the fine line of making a game show about the Bible both honoring and fun?  As "the face" of the show, what would he reflect to the world?

Frankly, we began this journey skeptical.

At the same time, we recognized an opportunity to bring exposure and awareness of Krabbe disease with the possibility to earn funds for research.  We also saw a potential platform to share God's compassion and hope through Jud's story, serving as a springboard for our ministry through Judson's Legacy.

So we proceeded with caution, wanting to be prudent and protective of our beloved boy's memory and our reputations.  We reminded ourselves we could step out of the process at any time.

What we discovered is a show in which we are so incredibly proud to be participants and a host with a genuine faith who has represented the Gospel with grace and love.  As we've watched Jeff Foxworthy interview and promote the program, we've gained such respect for him--the risk he has taken in hosting and producing this program, the gracious manner in which he shares his faith, the balance of humor and joy with truth, along with his down-to-earth, authentic presence.  He is clearly a person desiring to honor God with his life while living under scrutiny of the public eye.

We are so honored to be contestants in the premiere season of The American Bible Challenge and we hope you will support this ground-breaking Bible-based quiz show that is making history.  The first episode debuted as GSN's #1 program of all time with 2.3 million viewers.

Let's continue to grow the audience.  Tune in THIS Thursday 8/7c as Team Judson's Legacy shares Jud's story and competes, in partnership with Hunter's Hope, to win money for Krabbe Leukodsytrophy awareness and research...and set your DVRs to watch the whole season!

Author: Christina

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As we gathered last week with families for the Hunter’s Hope Symposium, I marveled, as I do every year, at the immediate connection felt among the parents.  There were sixteen new families attending this year and yet our hearts were instantaneously knit together.  In many ways the pain of leukodystrophy had joined us in community before we even met…because brokenness binds.

The manner by which heartache, weakness, and struggle create a foundation for depth of love, respect, and community is astounding.  We gather, not out of our successes and accomplishments, but out of our shared brokenness over our children.

Yet, the beauty of the experience is not in cultivating our sorrow, but rather a rich celebration of life, hope, and love that emerges out of our shared pain.  Our hearts are nourished by common understanding and solidarity, but it leads to genuine joy.

I may only have one week each year where I have the privilege of sharing life with this community, but my heart is deeply bound to them with a love that is only possible through the unity of pain.

Author: Christina

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Judson’s Legacy is so pleased to announce the public release of the short film Judson’s Eyes, winner of “Best Documentary" in the 2010 Pan Pacific Film Festival!

The short film is available to view in its entirety at: http://judsonslegacy.com/Judsons-Eyes and DVDs are also available to purchase for $6.95.  All proceeds from the sale of the film go to Judson's Legacy to help raise awareness and support research into Krabbe disease while communicating God's hope and comfort through Judson's story.

Please consider sharing the film with others, through email and social media, so many can see God's story of redemption through Judson's Eyes!

Thank you to all who have helped support this project financially and through prayer.  We are so grateful!

With hope,
The Levasheffs and the Judson's Legacy Team

Judson's Legacy News

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Where does one find safety and healing in their brokenness, hurt, doubts and struggles?  God designed the Church to be that place—a place where our wounds are bound up in love, a place where light floods the darkness, where our haunting shadows are rendered impotent, no longer able to permeate and destroy our lives.

But it has become especially evident to me in recent weeks how much hiding occurs in our Christian communities.  We hide our true feelings, we hide our pain, we hide our doubts, and we especially hide our sin.  We fear that if our walls come down and the dark areas of our heart are exposed, they will be dismissed, misunderstood, or even worse, we will be completely rejected.

So our wounds become imprisoned; we feel as though we must keep our pain and strife concealed until we have experienced victory.  Consequently, the hurting only express their hurt once it is overcome with hope.  The grieving only express their grief once they have found joy.  The doubting only express their doubts once they experience certainty.   The struggling sinner only shares their sin once they are triumphant over it.  The problem is that in our hiding, we become more susceptible to defeat.  Hope, joy, certainty and triumph are unable to flourish in darkness—true victory can only be found when our brokenness is exposed to the Light.

For the Church to be a place of safety and healing we must become more comfortable seeing the darkness in others…when it is still dark.  And we must also have the courage to share our own dark shadows.  Only when we live in the light and our raw wounds are exposed, can God’s grace and love truly flood our hearts for healing to begin.

Let’s let the healing begin…

Author: Christina

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Last night, after a day marking five years since our heart-sinking trip to the doctor—signifying the start of our journey into suffering, I was lying in bed staring at Judson’s photo on our wall.  My eyes were dry, but my heart was so, so heavy.

It is strange how my sadness over Judson can feel quite different with time and yet simultaneously feel completely unchanged; all the same deep pain exists inside me, yet there are no constants in my experience of it.

While I was fully swept up in the gaze of my little boy’s picture, I realized... my heartache may be endless, but it is not longer relentless.

Author: Christina

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I think most of us have done it at one time or another…

We’re out and about and happen to unexpectedly spot someone we know nearby, but eye contact has not yet been made.  For whatever reason, we don’t feel inclined to engage or interact with the person, so we look the other direction, pretending we never saw them, hoping they don’t see us too.

When Judson died, I became that person—not the person pretending—the person being dodged.  I noted how people diverted their eyes, kept their distance, and feigned not seeing me.   I could reason in my mind how it wasn’t for lack of care, but because my life’s fresh, deep heartache made them uncomfortable.  Yet it still hurt.

The other day I was talking with a friend about someone she knew who had recently lost her young, adult son.  My friend had observed a situation where this woman was in a crowd of people who were very much aware of her recent, searing loss.  But instead of being surrounded in love and comfort, this woman sat completely alone.  The vast, empty space around her was palpable—as one carrying an infectious, deadly disease requires quarantine.

Grief can be so incredibly lonely.  People pull away from the griever because they lack understanding, feel powerlessness to help, are afraid of saying or doing the wrong thing, or simply cannot handle the difficult nature of deep sorrow and the messiness it creates.  In turn the griever can begin to isolate themselves in order to protect their heart from further pain.

In many ways, loneliness is par for the course of the bereaved, but when people lovingly scale the walls of that isolation, pressing beyond fears and the unease by acknowledging or engaging the griever, it can help keep the wall from growing thicker and taller.  A meaningful hug, a loving touch, a tender look, or the simple, silent presence of a caring friend can make all the difference.

Is there someone God is calling you to reach out to today?

Author: Chrisitna

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This last week we have been walking through some incredibly difficult things with some friends—a situation of deep, deep brokenness, yet a brokenness so very different from our own.  But as I woke up this morning with them on my mind, praying that they be held and kept today, I was intensely aware of the reality that much of my ability to love and care for them right now stems directly from my journey with Judson.  In effect, I strangely and even achingly recognize that Judson’s suffering and death was necessary to equip me for this moment in time, for the ability to understand and engage their suffering in a manner that would have likely eluded me before; losing my boy has markedly expanded my space and capacity to embrace the wounds of another.

It brings to mind Tim Timmons, a singer and songwriter, who is battling an incurable cancer with recently austere news of additional tumors.  Though never having met before, we were both aware of each other’s stories when we ran into one another at the post office a couple weeks ago; there was instant solidarity through our trials.  In a blog post entitled “Pain: The Kindling that Fuels Empathy,” Tim wrote about our interaction describing how “pain understands pain. Sorrow understands sorrow. The more pain and sorrow that we endure, adds to the degree to which we can relate, empathize, and speak truth and encouragement into each other with an increased credibility. PAIN is the kindling that fuels and refines the truest empathy.”

As much as everyone knows this is a journey I would never, ever choose, part of the hope through my suffering is that God is providing the grace to love others in a manner that was previously unavailable to me.  And as I think of my friends and their heartache right now, I am especially grateful for the empathy God has been developing in my soul these last five years.

Author: Christina

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“Mother's Day is probably one of the most dreaded days for moms who have suffered the loss of a child. Even, if we have the blessing of other children, there is always that empty chair, that lump in our throat and an indescribable ache in our hearts for that one who is no longer here with us.” –Angie Green, Mothers Like Me

Mother’s day looms.

With each mention of the impending day to honor moms, it seems an involuntary, audible sigh, doused in a bit of dread, escapes my lips.  It’s  not that I don’t fully delight in being a mother for my two children and consider it the greatest blessing imaginable, or that I don’t want to be honored for my role as a mom—it’s just that the very gift of motherhood, in all its blessings, is simultaneously the source of my anguish.  It’s that deep, indescribable love as a mom unable to wrap itself around the very subject of my affections.  When I reach for my child, my embrace falls on mere shadows of the boy who holds my heart.

And so I feel the empty space of my son’s absence far more acutely on a day carved out to celebrate our love. 

Author: Christina

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In preparation for a recent short interview about Judson, I went back and was reading various parts of Eyes that See.  As I was revisiting my own feelings from the most intense and heartbreaking period of my life, I was simultaneously feeling the tensions of my heart in the here and now.

It became apparent to me just how much my feelings toward God fluctuate.  There are times I have felt so grounded in his love while other times my understanding of his care and compassion seem to elude me.  There are times I feel totally hurt and disappointed by him, while other times I am overwhelmed by his blessings and grace.

My feelings toward God fluctuate.

But my feelings in all my deepest relationships fluctuate.  My emotions toward Drake regularly change; I can go from deep gratitude, to anger, to frustration, to disappointment , to contentment, so on and so forth.  If I were to base our relationship solely on my unstable feelings, our marriage would never survive.  When the difficult feelings arise, I find it especially necessary to stay grounded in the truth of our relationship.  I remind myself of Drake’s character.  I reflect on how God brought us together and what he has done in and through our relationship.  I must consider his commitment and faithfulness to me.  I must bear in mind our love that has endured so much and the permanence of our marriage.  I need to focus on the constants that do not shift and change like my vacillating emotions.

I have to do the same in my relationship with God.  It is essential for me to stay grounded in the truth of our relationship as revealed in Scripture.  I must remind myself of God’s character.  I need to regularly reflect on all he has done in my life and in the hearts of others.  It is important for me to consider his commitment to his people along with the ways I have experienced his faithfulness in my own life.  I must bear in mind his enduring love and the permanence of hope stemming from his sacrifice for me.  I need to focus on the constants that do not shift and change like my vacillating emotions.

 My feelings toward God fluctuate.  But he does not.  He is unchanging and calls us to remember.  And in our remembering, our floating, drifting emotions, easily moved by the wind, become grounded.

Author: Christina

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I’m living in the middle.

Time has gently moved me away
From the intensely jagged edges
Experienced at the beginning.

Time also sweetly moves me toward
The realization of glory
To be experienced at the end.

But I’m living in the middle.
Distant from the outer limits
Yet stretched by the longing of both extremes.
Not at the beginning.
Not at the end.
Just spinning
In the in-between.

Because time has harshly distanced me
From the concentrated love and strength
Experienced at the beginning.

And time unkindly prevents me
From the fulfillment of hope
To be experienced at the end.

I’m living in the middle.
Distant from the outer limits
Yet stretched by the longing of both extremes.
Not at the beginning.
Not at the end.
Just spinning
In the in-between.

I need to know love
In the middle.
I need to feel strength
In the middle
I need to have hope
In the middle…

Not just at the beginning.
Not just at the end.
But as I’m spinning
In the in-between.

Walking through the middle of this journey of loss requires more strength and endurance than I ever imagined.  Please, God, come meet me in the middle and intervene in my in-between.

Author: Christina

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Oftentimes life finds us in a long, long season of waiting—waiting for God to move a heart, waiting for a circumstance to shift, waiting for a relationship to develop, so on and so forth.  Our longings can be for very good things, things that are pleasing to the heart of God, and yet they elude us.  Periodically we even have situations that lead us to believe the waiting is about to end, but instead, circumstances don’t pan out, leaving us with more painfully deferred hopes.

Although I am a firm believer that God is working in the waiting, preparing our hearts, shaping our souls, and developing qualities in us that can only come through delaying our desires, it can be very discouraging too.  When the waiting feels endless, we wonder whether we have missed the mark with our yearnings.  Should we give up these hopes altogether? 

Commonly, God does want to change our desires through painful waiting.  Other times, he is simply refining our hopes in the process.  But sometimes... after a long season of waiting, God graciously and abundantly chooses to give us that for which we’ve longed.  And the waiting ends!

Through the lives of a couple friends, I am recently reminded of the joy that can arise out of a long season of waiting—when God generously provides what had been, for a long while, withheld.

I have a friend who has spent much of her adult life asking God to provide a partner with whom she could share a life-long marriage relationship.  Over time she watched her dearest friends meet, marry, and start families.  Meanwhile, she had never even experienced a dating relationship.  Her heart broke in the waiting, wondering, and diminishing hopes.  But then, it happened.  She met an amazing man 10 months ago and now, after years of hoping and praying, they are engaged to be married.  The waiting has sweetly ended.

I have another friend, married for several years, who longed to start a family.  Three years ago, she was thrilled to discover she was pregnant.  Mid-pregnancy she lost the baby.  She got pregnant again.  And lost her second baby.  She got pregnant again.  And lost her third baby.  My friend began to wonder whether she would ever have the gift of holding a child of her own, swaddled in her embrace.  Her heart broke in the waiting, wondering, and diminishing hopes.  But then, it happened.  She got pregnant again and just two weeks ago met her precious baby boy, face-to-face.  The waiting has sweetly ended.

Because of their waiting, the joy has been richer and deeper, not only for them, but for those who have waited with them. 

Ultimately, all our hearts groan in waiting, a longing that is entrenched in a guttural desire for a life where there is no waiting—a life where the fulfillment of all our yearnings are met—a life that can only be found in the presence of God himself.  Until that time, we live in yearning.  God certainly does not always give us the desires of our heart, but I have recently been reminded that sometimes, he does.  And the waiting ends...

It is a glimpse into eternity where we will never wait again!

Author: Christina

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I received an unexpected phone call this morning from the city of Costa Mesa informing us that Judson’s sycamore sapling at Wilson Park had been vandalized.  For awhile we had been concerned about the tree because its growth seemed stunted; it didn’t appear to be developing as it should.  But the city official on the other line spoke of malicious destruction described as someone having karate chopped it several times.  It was so badly beat up that he couldn't even identify its species any longer.  So they cut it down, leaving a very small stump.

I felt punched in the gut.  I tried to tell myself it was just a tree in an effort to downplay all I was feeling. 

But it wasn’t just a tree…

This is the sapling planted in memory of my dearly loved and missed son.  This is the tree that was dedicated with family and friends in 2008 as a symbol of life, to grow healthy and strong and provide a place of rest and comfort for all who would sit in its shade.  This is the tree we decorated on November 7th each year as part of remembering Judson’s home-going.  This is the tree I’ve loved, cared for, and tended to.  And just like Judson, it lived a very short life. 

It felt agonizingly symbolic.

I went to the park today and lamented the death of the tree.   I sat and stared at the little clean-cut stump.  I played with the roly-polys making their home at the base.  And as I cleaned the memorial plaque that no longer marked anything, I felt even more acutely, the reality of death and decay in this world.   The groaning of my soul for heaven became a little more audible.

The city of Costa Mesa will be planting a new sycamore in honor of Judson.  Maybe this new tree can be symbolic of Judson’s new life—vibrant and full!

Author: Christina

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I was in my Starbucks “office” a few months back wearing my Jud Bud shirt when someone who followed our journey recognized me, introduced herself, and introduced me to her friend, Dana, who was pregnant at the time.  What I did not realize in that moment was how much my heart would grow to love the baby girl she was carrying in her womb.

Subsequently, I began to run into Dana regularly at my “office” and in time discovered that her unborn baby had Trisomy 18 with multiple heart defects.  Dana didn’t know whether or not she would have the gift of holding her baby alive, much less bringing her home.

Olivia Jane was born on January 25th at 5 lbs. 1 oz—alive!  And thus began Dana and her husband Jeremy’s journey of caring for a special messenger from God.

Over the last forty-seven days, I have been given the privilege of sharing in a bit of their journey with baby Olivia.  As Dana and I have regularly sat together in the coffee shop these last several weeks, intimately engaging the pain of having a child given a death sentence, patrons of Starbucks peek over her shoulder to soak in the beauty of her tiny baby.  Oohs and Aahs ensue.  Meanwhile, many people express common assumptive statements about Olivia’s life and development , completely unaware how those hopes for her will likely go unrealized, and how it triggers pain in her mom’s heart. 

Yet as Dana and Jeremy’s lives have been torn, all at once completely and unconditionally loving sweet Olivia while also fighting the inclination to protect themselves from the painful cost of doing so (Caring Bridge Journal 3/3/12), Drake and I have observed the beauty pouring forth from their sacrificial and risky love; deepening, stretching, sharpening, softening, and melting their hearts.  Despite the fact that Olivia’s body is rapidly fading from this life, their love for her and the grace emerging because of it will have permanence both now and for eternity.

They are weary, broken, and hurting, trying to live in the moment.  But instead of bitterness and resentment arising out of the impending death of their child, they are modeling gratitude over the gift of life, a sweet precious life indeed.  And in that one conscious choice, God’s redemptive work takes root. 

It is beautiful to observe.

You can follow Olivia’s journey here.

Author: Christina

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“Mama, do you remember the time I dropped all of my CD’s?”  Jessie asked as I was thumbing through the CDs in our car.  “I have a bunch!  The music is really beautiful and I have lots of stories.   I had to pick up SO many CDs.”

“I remember that.  You do have a ton, Sweetie!”  I affirmed.  “Do you know why you have so many CDs, Jess?” I asked, always embracing an opportunity to share with my girl about the many gifts in our life because of her brother.

“No, why?”

“Well, when your brother was sick and had gone blind, many people blessed us with a lot of music and different stories that he could listen to and enjoy even though he couldn’t see.  Pretty, thoughtful, huh?”

“Yeah.  We have a lot!”

“We do.” I confirmed. “And in many ways they are like a gift to you from your brother flowing out of the love we received from so many people.”

Outside of the soft music filling the car, there was silence.

A few minutes later, as if she had an epiphany, Jessie asserted, “I really wish there was a type of balloon where the top could open up.  I would put some of Judson’s favorite CDs in the balloon, close it up, and send them to heaven for him.  Then he could open up the balloon, take the CDs out and listen to them again… Oh! And maybe I’d put a toy in there too.”

“What a lovely idea, Jessie!  I wish there was a way to do that too,” I affirmed as my heart felt both full and empty all at once.

“Judson must have a ton of balloons up in heaven,” she pondered.  “I can’t wait to see all of them when I get to be there with him.”

My mind began to imagine Judson holding a huge bouquet of balloons.  And then I pictured him receiving a special flip-top balloon from Jess, opening it with great excitement and bursting with joy when he discovered the treasures sent from his sister.

Though these thoughts are imaginary, Jessie’s genuine love expressed through balloons is the extent of her relationship with her brother; this is her reality.  She doesn’t get to play with him. She doesn’t get to hug him.  She doesn’t get to go places with him.  She doesn’t get to (have to) share with him.  She doesn’t even get to bicker with him.  The list of her losses is endless.  And although Jessie’s very young experience of Jud’s love was short and limited, she yearns for more.

On one level it triggers tremendous grief for me, watching my ladybug live each day in longing for Jud, but on another level, I cannot help but rejoice at the depth of her love, prevailing over death, and her anticipation of their future relationship as siblings in heaven.

Every fiber in my being longs for it too!

Some of the many crafts Jessie makes for her brother.

Author: Christina

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I was sitting on the couch in my parents’ home Saturday evening, laptop at hand, outlining some ideas while the TV provided background noise to my musings.   Suddenly my attention was awakened to the screen when I heard the words, “Whitney Houston was found dead this afternoon…”

My focus shifted intently to the news of her passing being broadcast through the waves.

It’s not that I am a big Whitney Houston fan (I don’t even know if I can name more than a couple of her hit songs), but I was jarred from my thoughts because life’s great equalizer had just catapulted itself  into the living rooms of people all over the world—death.   

Whitney Houston had a life of iconic proportions; incredible talent, beauty, fame, fortune, and all the drama that came with it.  But in a moment it was all snuffed out.  Gone.  Her daughter is left without a mother and her absence will leave a hole in the hearts of the many who loved her.

But what especially struck me as I listened to broadcasters describe Whitney’s life was the fleeting nature of the values illustrated.  Beauty, fame, talent, fortune (or squandered fortune as the case may be) were the ways commentators ascribed worth to her life…but those things have absolutely no value to her in death.   None.

I don’t know Whitney’s heart or God’s work in her life, but I do know the only hope in death is a life lived out of the grace of God wherein the things he values become our values.  It’s the only legacy that truly crosses the barrier from life to death. 

Like Whitney, none of us know the day or hour when our last breath will escape our body, but in the meantime I pray for the grace to live a life that reaches into eternity.

Author: Christina

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It’s 2012!  And with a new year comes renewed hope and anticipation for the future.

We are especially delighted to have just signed the last major documents that will move Judson’s Legacy from a pending non-profit to official status as a 501(c)3 organization.   We expect we are just one or two months away from fully launching Judson’s Legacy!  This is a sobering and exciting notion!!!

It has been a long journey getting to this milestone, but we are grateful for all God has been doing to prepare our hearts, give us partners in our ministry, and provide necessary resources.

Our mission, through the sharing of Judson’s story, continues to be propelled by a longing to see God move and change hearts as we witness to his compassion, comfort, and hope through our own suffering and loss.  Meanwhile, we will now be making more of a concentrated effort to raise awareness of Krabbe and fund research for leukodystrophy diseases.

Judson has already been having a significant impact on the research community.  Dr. Patti Duffner, one of the premiere researchers of Krabbe, regularly shares Jud’s story in her presentations about the disease.  In an email to me she indicated, “I use Jud's video all the time and it has such incredible impact!  I call the later onset form of Krabbe...Judson's disease.  I wouldn’t be surprised if one day it is known as such.”  We are honored by her words and even more convinced of our calling to allow Jud’s life to shape future research.

In a nutshell, Judson’s Legacy exists to change lives for the Kingdom while supporting efforts to give Krabbe Kids a chance at life on earth.

If you would like to help us make a difference, you can join our mailing list for updates and announcements.  Simply click “Connect With Us” then “Subscribe” and fill in your name and email address.

And as an organization run completely by volunteers, we are pleased to have every donated dollar directly benefit the mission of the organization.  You can make a tax-exempt donation through Paypal by clicking the link below:

Thank you for allowing Judson’s story to touch your life and helping us touch the lives of others!

More to come…

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As much as this time of the year is filled with festivity and fun, the Christmas season can be a very difficult time for so many.  Even with the hope of the Savior, wishes of merriment and happiness can almost feel like salt poured into an open, raw wound; sometimes a heart is so completely broken that jolliness, even at Christmastime, is elusive.

When someone sent me a quick message during the season last year, instead of ending with a Merry Christmas, she signed off with Tidings of Comfort and Joy.

I marveled.  It was a perfect expression.

As she quoted the age old carol God Rest Ye Merry Gentleman, her words carried such appropriateness for all hearts during the season, even those who are hurting,   She had captured in that simple phrase all the blessings of the season with great sensitivity to possible pain.

This is the first Christmas since losing Judson that my heart has truly been able to embrace the merriness of the season, but seeing as our Jud Bud was born on Christmas Eve it will always carry loss and pain.  To be blessed with tidings of comfort and joy is a great gift.

So from Judson’s Legacy and the Levasheff family, we wish you...

Tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy

Author: Christina

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All the pleasures this life affords, especially in our wealthy, well-developed societies, can erroneously attach us to this world.  But pain is the great disconnector.  Suffering leaves us longing for more.  It reminds us that all is not as it should be.  It highlights the gaps in our lives, destined to remain unfulfilled here on earth.

God didn’t intend for us to be attached to this world.  We are foreigners passing through this land on our way home.  Yet, with all the amusement, indulgences, entertainment, and comforts that beckon for our attention and affection, it is easy to lose sight of the Kingdom and get all wrapped up in the here and now.

But pain sets our eyes on the hope of heaven.  Pain leaves us desperate for a place where there is no more death, mourning, crying or agony, where every tear is wiped away.  Pain refocuses our hearts on the eternal.

I am anxious for heaven.

I want to run on greener pastures
I want to dance on higher hills
I want to drink from sweeter waters
In the misty morning chill
My soul is getting restless
For the place where I belong
I can't wait to join the angels and sing my heaven song. 
(Phil Wickham: Heaven Song) 

I trust in God’s purpose for my life here on earth, but with each twinge of pain, I get more and more eager for heaven!

Author: Christina

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Over a year ago, I read this Postcard:

A natural response to reading this secret may be shock and disgust.  How could someone who has endured the heartache of losing a child possibly wish any such devastation on another? 

But if I look beyond the horror of this secret.  I see deep, deep pain.  I see a person so isolated by the anquish of their loss that they’re desperate for understanding—an understanding that might only come by experience.  I see someone who feels pain upon pain due to insensitivity.  I see someone who has felt unable to meet the unrealistic societal expectations for grief.  I see someone who has lost friendships and no longer fits in the same ways they used to.  I see someone whose whole life has been turned upside-down while feeling alone in the heartache.

I don’t think there is any part of this writer who actually wishes for someone to lose a child; I think this secret simply reflects a longing for understanding, for the space to feel the depths of heartache without judgment. 

I am, of course, reading between the lines, but I am intimately familiar with the feelings that stem from isolation, insensitivity, unrealistic expectations, and even judgment that can emerge out of the loss of a child.  There are times I have thought to myself, I just wish they understood!  It’s not that I would ever, ever want another soul to experience this heartache.  But it is hard to weather some of the social pains and pressures on top of an already broken heart.

But in reality, aren't we all desperate for people to understand us in our pain?  None of us want to feel alone, or judged when we hurt.  The validation that can arise when someone gets a glimpse of our heartache and "gets it" can bring sweet healing.

So this postcard reminds me to be an expression of grace and validation for all the brokenness around me, whether or not I have walked the same path!

Author: Christina

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It is such a gift when new memories of Judson, memories I haven’t recalled since losing my son, unexpectedly surface.

While Jessie and I were walking home from school the other day, she noted that one of the sprinkler heads in the grass along our path was sticking up out of the ground.

Suddenly, a sweet new memory arose out of the cobwebs of my mind…

When Judson was just learning to walk, we would frequently meander around our complex, exploring the area.   The sprinkler system was on a timer that regularly watered the landscape, and after each period of saturation the sprinkler heads, rather than retreating back into the ground, would stick straight up out of the lawn, beckoning to my little boy.

With great enthusiasm, Juddy would lift his little foot over each spray nozzle and with all the strength he could muster, stomp with glee as the sprayer fell victim to his power, collapsing into the ground.  Giggles of victory would follow as he energetically made his way to the next sprinkler.

A precious memory.

Precious, precious memories such as this are such treasured gifts on this journey.

Author: Christina

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We all love a good story.  We are especially drawn to stories of triumph because they can be particularly moving, inspiring, and full of hope.  A good, triumphant conclusion leaves us satisfied, while those without can be unfulfilling.   

As I had the opportunity to listen to various people share a bit of their story in a large-group setting this weekend, I was touched to tears as I heard one triumphant story after another.  I was moved, inspired, and filled with hope.  Each one shared out of a heart that had struggled, but had experienced, or was experiencing, triumph over the circumstances.

But as I searched my heart, I also realized that some of my tears were tears of mourning.  I was mourning my own story.

When Judson was sick, we were begging God to miraculously heal our son.  We were envisioning the triumphant story that would flow from his restoration here on earth.  We were pleading with God for a story that would move and inspire faith, a story full of hope.  It would have been a story where I could have stood up in that room this weekend, holding and hugging my son as a reflection of God’s power and victory in this world.

But that isn’t my story.  My story is not one of triumph.  Instead, God chose for us a story of loss.  He gave us a story where if I were stand up and share, all I have to hold before people is my broken heart.  My story is not one that causes people to spontaneously erupt in applause and celebrate—it is not inviting or appealing.  On the contrary, it is a story that triggers tears and sadness.  It’s a story that can even make people turn their face away, leave the room, or want to run the other direction.

Yet God is in both kinds of stories.

God is present in pain.  Period.  God is moving, inspiring, and full of hope in the pain, not simply after being set free from it.  The hope of our story lies in the suffering, not a triumphal emergence from it.

Of course we have other personal stories of triumph , which are such a tremendous gift, but God’s shaping story for our lives is simply about clinging to him as we navigate lifelong loss.  It’s not glamorous and doesn’t hold a lot of allure, but it’s also not a story in isolation.  There are so many stories of perseverance in pain when the triumph we all long for is elusive.  But God is at work and worthy of praise.

Now I would be remiss not to mention that there will absolutely be triumph to our story—the most triumphant climax imaginable—but it won’t occur in this lifetime.  Our triumph requires a life of patient endurance.  And part of my grief is to mourn the loss of earthly triumph.  But part of my healing is to recognize the hope of God’s sustaining grace, no matter how the story ends.

Author: Christina

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