I came across a beautiful and heartbreaking video on Facebook the other day. It was about a boy named Judson who had Krabbe disease and passed away just before he was supposed to turn 3 years old. I’ve never heard of Krabbe disease. I didn’t know such a thing existed, and yet approximately 1 out of every 100,000 people worldwide are affected by it. Approximately 72% of these cases are infantile Krabbe, in which symptoms begin before the age of one. These babies often die before the age of two.
Judson was just like any other boy his age. He liked being outside, getting dirty, hunting for bugs, swinging, sliding and making friends. He loved any type and form of transporation and could even identify cars by their make, like whether it was an Impala or a Scion. His favorites were Lightning McQueen, like my little boy, and Thomas the Tank Engine. One of his dreams was go to see a Monster Truck show.
He was a boy that was full of life, smiles, joy, kindness, wonder, energy and eagerness. He loved surprises, big or small, and he loved to sing various songs that took him no time at all to memorize. He not only liked to sing but he was also quite the chatterbox — he had a boundless vocabulary and especially clear articulation, but even more striking were the actual words he spoke. He was extraordinarily others-centered in his questions and concerns, making special effort to praise and encourage people. Jud had a notably sweet spirit! This was most reflected in his relationship with his younger sister, Jessie. He was a loving and tender big brother who would share and teach his “Ladybug,” and shower her with hugs and kisses.
Even as a young child, he had a fierce love of God and he was frequently captured by his Toddler Bible. His favorite biblical story was that of Job, the sufferer. Drake and Christina, Judson’s parents, must have read the story of Job a thousand times to Judson without ever realizing that Judson himself would soon suffer. Jud also really enjoyed the stories of baby Jesus and the little boy with two fishes and five loaves of bread.
Here is the video that I watched — grab some tissues:
But, out of the blue, in May of 2007, Judson began stumbling. Though he began losing all his capacities, the Spirit of God’s presence in his life became even more evident. One afternoon when Christina could not hold back the tears as she attempted to put Judson’s shoes on his stiffening feet, Jud reassured her that it was going to be okay and then began to sing Great is Thy Faithfulness: “The steadfast love of the Lord never ceases. His mercies never come to an end…” In the midst of his suffering Judson remarkably modeled faith, hope and joy. It became evident God was using him, a little two-year-old boy with a broken body, to teach us much about life; Judson’s sweet spirit and character are his legacy. And by the grace of God, his life continues to make a difference in the hearts of people and in the fight against Krabbe disease.
“As his suffering intensified, no longer able to use his hands or arms and no longer able to speak, Judson’s mind remained intact. He had tremendous pain, frustration, and confusion, but his smile and laugh amazingly communicated a supernatural depth of joy that was profoundly baffling to those in his presence; God was clearly holding and sustaining this little boy in the midst of his horrific affliction.”
Over a period of only five months, Judson had become completely paralyzed, blind, and mute. During that time, it was discovered and quite clear that this sweet little boy was being ravaged by Krabbe Leukodystrophy, a genetic disease.
“On November 7, 2007 the critical functions in Judson’s body shut down and Drake, Christina, and Jessie were left with an unimaginable hole in their lives. But Judson’s little voice that had been squelched on earth by Krabbe disease regained life anew in the presence of Jesus, his Savior whom he loved. And though he may never have made it to a Monster Truck show, there is no question he is walking, leaping, and praising God with his voice once more.”
Krabbe Disease is a rare, genetic, currently-incurable and ultimately fatal disorder. It is one of several known leukodystrophy diseases: genetic disorders that progressively destroy the white matter of the brain. A child with Krabbe disease is unable to produce the GALC enzyme that is essential for metabolizing several compounds in the body. Therefore, toxic substances build up and destroy the myelin sheath in the brain—the nerve tissue that covers and insulates the nerves. This impedes the conduction of nerve signals from the brain to the rest of the body; as the myelin degrades, physical disabilities increase, ultimately affecting critical life functions.
What can be done about this awful disease?
Stem Cell Transplantation (HSCT) has been shown to significantly extend life and improve the quality of life for children with Krabbe Disease. Doctors transfuse healthy, unrelated donor cells with normal GALC enzyme activity, into the Krabbe patient. A successful stem cell transplant stimulates normal development of myelin and reduces neurological symptoms.
However, the key for a successful transplant is that it be performed before a child is symptomatic; once the myelin begins to degrade it is irreparable. Therefore, newborn screening is essential for diagnosing Krabbe disease before the onset of symptoms so families have the option for stem cell transplantation as treatment.
A newborn screening test, using the few drops of blood obtained in the hospital from the required heel prick, can detect Krabbe disease early in a baby’s life, providing the possibility for treatment. Just like Judson, a Krabbe baby will usually appear healthy at birth and possibly for several years, yet, in fact, have a heinous genetic disorder lurking in their system…then one day it devastatingly appears. However, newborn screening of Krabbe disease can give those children a chance at life.
What can we do?
- Advocate for newborn screening of Krabbe disease in your state.
- Support JudsonLegacy and help fund vital research.
- Help spread awareness by sharing Judson’s video.
- Develop a street team and begin a homegrown movement in your circle of influence.
I felt so inspired to share that video and Judson’s story with y’all after I watched the video so I contacted Christina, Judson’s mom, about writing a post. I had never heard of Krabbe disease before I watched that video. I’m hoping that I can spread awareness to at least one person who has never heard of it. If we all work together to share his story, awareness will spread and cures can be found. 🙂
If you’re interested in reading more about Judson and his story, subscribing to their newsletter, finding out how you can help, or connecting with them on social media, you can head over to JudsonsLegacy.org to find all of the information that you need. There are additional videos of Judson if you’d like to watch them. He truly was a bright little boy that was full of faith and love.
The source of all of the photos and information in this post was gathered from Judson’sLegacy.org. Judson’s Legacy shares the Gospel through Judson’s story as an expression of God’s grace in the midst of heartache. They also equip people and communities to stand beside the broken. In turn, they raise awareness of Krabbe disease and fund research for a cure.