Previously published in the 2017 Ouachitonian yearbook.
Most young adults spend their free time with friends, or watching movies. But Hannah Gray, a sophomore communication sciences and disorders and psychology double major from Dallas, Texas, spent her time with a small boy named Julian.
“I first met Julian when he was four years old, and I got hired to run the childcare facility at the gym where his dad was a coach. I watched him and his sisters every single day for a year before his family decided to hire me as a nanny. I probably spent more time with the Kampfschulte kids in high school than I did with my own friends,” said Gray. “His family loved me and invested in me for four of my most favorite years.”
Julian Kampfschulte was a nine-year-old boy who was diagnosed with Adrenoleukodystrophy—more commonly known as ALD— a brain disease that mostly affects young boys. It was a build up of fatty acids in the brain that causes the child’s body to slowly shut down and eventually results in death.
“It manifests itself differently in every boy, but for Julian it started with loss of his ability to hear,” said Gray. “He would go a couple of weeks and then have another big regression. He lost his sight second and then eventually his ability to walk and control his muscles.”
In response to Julian’s diagnosis, his parents Jenna and Kurt Kampfschulte started a movement called Snuggle Julian that raised awareness for ALD and helped them inform Julian’s loved ones of the status of Julian’s health.
“Once we got the final diagnoses and knew that the outcome would not be good, we used Snuggle Julian as a fundraising platform. Jenna just kept telling people ‘We can’t treat his disease, so let’s treat his life.’ So, she did that by raising enough money to take him to Hawaii—the only thing he asked for was to pet a dolphin— and to throw him a huge party before he got too sick to really be around people,” explained Gray.
After Julian’s death, Snuggle Julian turned into a movement to raise awareness for ALD. The main goal was to have ALD added as one of the required screenings for newborns.
“All newborns get screened for certain types of diseases when they are born,” said Gray, “Everyone who knew and loved Julian is passionate about this fight because had Julian been screened for ALD as a newborn, he could have had blood transfusions, and he would be alive today.”
Since Julian’s death, family and friends, including Gray, worked tirelessly to get ALD on the newborn screening. Starting immediately after Julian’s diagnosis, Julian’s supporters wrote letters to Texas Governor Greg Abbott, pushing to have Julian’s story heard.
“Last week, Jenna got to go and testify in Austin, and things are looking incredibly hopeful,” said Gray, “Having something healthy and productive to channel our grief into has been such an encouragement for everyone who loved Julian.”
Julian’s life had left nothing short of a lasting legacy on Gray and how she viewed even the smallest things.
“This summer was the peak of his suffering, so it was hands down the hardest thing I have ever had to do,” said Gray. “But I would not trade a minute of the time I got to spend with him for the world, even if he was sick. That boy loved so big, and the Lord has used his story to shape so many lives. He touched more people in nine years than I could hope to in a lifetime.”
By Miranda Hudleston
Photo by Andy Henderson
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