Julian Kampfschulte with his first-grade teacher, from “Snuggle Julian” video, linked to below.
Until he was 7, Lake Highlands’ Julian Kampfschulte was a healthy first grader who attracted peers and teachers alike with his humor, charm and smarts. The Kampfschulte family — with two loving parents and, including Julian’s two sisters, three beautiful kids — seemingly had all possibilities at their fingertips.
But something changed in Julian one day in late 2015. His teacher at White Rock Elementary noticed some learning difficulties in the classroom — concerning, since Julian was one of her “brightest students,” and his mom noticed a strange eye movement. After about two weeks, Julian, his family and friends were left to deal with an unthinkable situation — Julian, despite his still-glowing smile and heartwarming laugh and undeniable charisma, was dying.
Nothing at this point can be done to stop the progression of adrenoleukodystrophy, ALD, the degenerative brain disease with which Julian was born.
Sometimes when caught early enough, ALD can be treated with bone marrow transplants, but not after the carrier becomes symptomatic, as Julian has. ALD took the boy’s hearing and is causing him to go blind.
Even as these devastating symptoms began to physically and mentally change Julian, his homeroom, art and physical education teachers, as well as his young classmates, drew closer to him. They gathered around him in the mornings when his mom brought him to the elementary school — educators learned to sign and communicated with him sometimes through their own tears; little boys and girls wrapped their arms around him and guided him to his classroom each morning.
“He makes it most days because his friends take care of him really in a way 7-year-olds shouldn’t have to,” Julian’s dad says in this short film that shows the family struggling through the first year of Julian’s illness. Even in his own heartbreak he expresses concern for the gentle-hearted classmates who will have to, very possibly, one day soon, experience the death of a friend.
Julian Kampfschulte and his friends, from the “Snuggle Julian” video. Click link below to watch full story.
Today the Kampfschultes are doing their best to make each of Julian’s days good. Doctors give him 2-5 years to live, Julian’s mom says.
“We would much rather focus on his life than his disease,” she says in the video.
The Kampfschulte parents are helping to push federal regulations that would compel medical professionals to test for ALD in infants.
The whole Lake Highlands community has rallied around Julian and his family since the onset, but Saturday Sept. 24 will be an especially big day for the Kampfschultes and supporters. A fundraiser is planned to raise money for medical expenses and to show support for Julian and his family.
It starts at 8:30 a.m. at the Lake Highlands Strength and Conditioning School at the southeast corner of Walnut Hill and Audelia. The event features workouts for kids and adults, bounce houses, face painting, breakfast tacos and bloody Marys — entry is a cash or check donation at the door.
Event flier
