DALLAS -- The night before he died, friends and neighbors of 8-year-old Julian Kampfschulte gathered outside his bedroom window in Lake Highlands, and in the darkness on his front lawn, sang "Amazing Grace."
Now, as they prepare for his funeral, his neighborhood is alive with his favorite colors -- rainbows of ribbons on trees, front porches, lamp posts, and street signs, and even on the mascot in front of his school.
“It’s like Julian is standing right there, because those ribbons remind you of Julian. To remind you that Julian is standing right there,” said classmate Merritt Carspecken.
It's a lasting promise that the fight will continue against the rare disease that claimed his young life.
Julian was a first grader at White Rock Elementary when, around last Thanksgiving, he began to lose his eyesight and his hearing. The eventual diagnosis was adrenoleukodystrophy (ALD), a rare and deadly genetic disease that affects 1 in 18,000 people. The disease quickly ravages the brain, leading to what amounts to progressive dementia.
Death or permanent disability, according to the Stop ALD Foundation, comes within just two-to-five years of diagnosis. Julian’s quick decline took barely a year, as thousands of Facebook followers hoped and prayed it wouldn't.
“He was someone at our school who we all loved and it’s brought all of us so close together,” said White Rock Elementary Principal Lee Walker.
Tuesday classes included opportunities for students to meet with counselors to talk through their grief.
“It’s been a sad day, I would say, here for us and I think it will continue to be that way as we remember Julian and what a great kiddo he is and what a great family the Kampfschultes are,” Walker said.
Julian’s family and his teachers agreed not to hide his struggle. Julian continued going to school as long as he could.
His first grade classmates helped him at every turn. They were his eyes and ears on the playground, in the hallways, and in the classroom. They supported him, they loved him, they encouraged him.
“He was always joyful with me. He was joyful with everyone I knew," said Julian’s classmate Cullen Faris. "He was special to others."
They took the life-and-death journey with him.
“He loved all colors of the rainbow, and the kids would ask, 'What color do you like?' and he would say, 'All colors,” Walker said. "He would say with his friends, ‘Let's go chase the rainbow.’"
That’s why, starting last week, his classmates and their parents began decorating their Lake Highlands neighborhood, Julian’s trees at his home, and his school with all those rainbows as a symbol of their friendship, and a promise.
“It reminds me of Julian,” said classmate Andrew Wilson. “He was very special to me."
And, Tuesday night, at a restaurant called Shady’s just around the corner from his home, the rainbows and the promises, continued.
Julian's classmates, their parents, his teachers gathered for a celebration of his life, and promised to continue pushing for legislation to have all Texas newborns screened for ALD. Currently, it is not included in standard newborn screening. While ALD is nearly always debilitating or deadly, treatments to slow its progression are available (and more are being tested), if it is identified early.
“It’s been one of the most gut-wrenching and heart-breaking things to watch a family go through,” said neighbor Stephanie O’Brien. “But at the same time, to see the love of the community and the support of the kids for Julian -- really an incredible thing in the midst of so much sadness.”
It has touched Julian's family in ways his father struggled to comprehend.
“If you don’t have a community like ours to literally to pick you up, I don’t know how you get through something like that,” said Kurt Kampfschulte at the Tuesday night community celebration of his son’s life.
“We had that community to pick us up. And we don’t make it if not for them.”
So, as a grieving family focuses now on getting legislation for all newborns in Texas to be screened for this genetic disease, they appreciate the fact they do not walk this horrible gauntlet alone.
That's what all those ribbons tell them in Lake Highlands: A promise to Julian and his family that the community will keep walking with them through the grief, the hard days, and the battles yet to come.
Julian’s funeral is Thursday at Fellowship Bible Church in north Dallas.