Julian, from the Snuggle Julian site.

Julian, from the Snuggle Julian site.

The poignant story of young Julian Kampfschulte, the Lake Highlands boy battling a degenerative brain disease with which he was born is one we’ve been following for a while now.

In fact, much of Lake Highlands seems to have latched on to the Kampfschulte’s story, therefore many readers already know, from a post on the Snuggle Julian Facebook page, that Julian died yesterday.

Julian Vaughn Kampfschulte 8/25/2008—10/6/2016
Never was a boy so loved.
He is at peace.
Service details to follow.

Just two days before his death, Julian’s former classmates and their parents gathered outside the 8-year-old’s window to sing “Amazing Grace.”

Two weeks ago, Advocate’s photojournalist Danny Fulgencio and I attended a fundraiser for Julian at a Lake Highlands gym.

Lake Highlands families turned out in droves to support the family. (Photo by Danny Fulgencio)

Lake Highlands families turned out in droves to support the Kampfschulte family. (Photo by Danny Fulgencio)

We met Julian’s parents, Jenna and Kurt, and spotted his two sisters, but Julian was too ill to attend. He can barely hold his head up for more than a few minutes at a time, they said.

Their hearts were warmed, however, by the massive turnout (which I very inexpertly live streamed on Facebook below—we are still learning).

A few days ago, they noted, “His condition has advanced significantly and we are working to manage his pain and keep him comfortable through the last bit of his journey. We are of course heartbroken, but also lifted up by the love and support that comes through notes, prayers, meals, wine — not going to lie — play dates for [Julian’s sisters], and hugs — both physical and virtual.”

Just a year ago, Julian was a seemingly healthy 1st grader who attracted peers and teachers alike with his wit, charm and intelligence.

But soon after his teacher at White Rock Elementary noticed changes in his work, Julian was diagnosed with adrenoleukodystrophy, ALD. He gradually lost his sight and hearing.

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 Jenna brought him to school — educators learned sign language 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.

One 2nd graders letter to legislators, courtesy Snuggle Julian site.

One 2nd graders letter to legislators, courtesy Snuggle Julian site.

“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 Kurt expresses concern for the gentle-hearted classmates who, he predicted, would soon experience the death of their friend.

Though they could do nothing to save Julian’s life — only make each moment, every day, as joyful as possible — the Kampfschultes began pushing for federal regulations that would compel medical professionals to test for ALD in infants. If treated early enough, a child with ALD can live a long life.

Money raised at the gymnasium fundraiser and through an earlier unbelievable donation from the Lake Highlands community of nonprofits will help fund not only Julian’s funeral expenses but also a lobbying effort.

The Kampfschultes say you can help by printing, signing and sending this letter to the Texas legislature.