Friends who embraced Julian Kampfschulte in first grade are now 18. His family is raising money not only for a cure for ALD, but to send his classmates to college.
DALLAS — Sometimes you choose pain. Other times, it chooses you.
And sometimes, in the face of unimaginable loss, you find the strength to give that pain purpose.
Julian Kampfschulte’s family has spent a decade giving extraordinary purpose to a life cut much too short by adrenoleukodystrophy. ALD, as it is more often known, is a rare genetic disorder that impacts mostly boys.
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It gradually took Julian’s hearing, vision, and muscle and brain function. Eventually, it took his life.
He was only 8 when he died. Today, Julian would be 18.
And the children who knew and loved him in first grade are now high school seniors, approaching a milestone he never got to experience.
A decade ago, as Julian struggled with the effects of ALD, a camera came to their first-grade classroom. It captured video of young kids who easily could have focused on what made their classmate different. But instead, they focused on being Julian’s friends. And they didn’t need an adult to tell them how to treat him.
It was a remarkable thing to witness, said their former teacher Toyia Crisp.
“I just got to watch all these kids take on a responsibility and a role that they wanted to without me ever telling them, he needs this. They just knew it,” Crisp said.
“I never knew it was goodbye,” said Cullen Farris who is now in his senior year at Lake Highlands High School “I knew he was sick. I didn’t really know how sick he was. I didn’t know that was the last moment we were all going to have with him.”
Julian’s 18th birthday provided reason for a reunion between Crisp and her former students, who are now young adults.
“I genuinely feel like it was orchestrated universally for him to be in Toyia’s class, for those children to be part of his life, for him to have lived the life he lived,” said Julian’s mother Jenna Kampfschulte. “It’s really kind of beautiful.”
Every year, Julian’s family holds a fundraising workout around his birthday.
The funds not only help with ALD research.
They are working to fund multiple scholarships for the students who loved Julian through his heartbreaking decline.
So after working out at a gym in Lake Highlands, the crew moved a few doors down to continue raising money at a celebration at Vector Brewing.
“I wish this was his birthday party,” said Julian’s dad Kurt Kampfschulte. “But it’s good to see the kids he grew up with are doing good things. They are really, really special people. And part of him lives on in them.”
Early detection can make a critical difference in a patient diagnosed with ALD. Identifying the disorder through newborn screening can allow children to receive treatment before irreversible damage occurs.
Julian’s family helped push Texas to include ALD in its newborn screening program. That effort has already had an impact remarkably close to home.
Tyler and Taylor Hall’s son, William, was diagnosed through the state’s newborn screening. At the time of the diagnosis, they lives across the street from the Kampfschulte’s previous home. The Halls launched an aggressive fundraising campaign to help advance the search for a cure.
“A year and a half later we are at $3.1 million, and we wrote the largest check the disease has ever seen from a philanthropic source this last fall,” Tyler Hall said.
William takes medication three times every day, but he’s thriving.
“He’s like every other 2-year-old. He’s busy, loves cars and Spider-Man, and he keeps us on our toes,” Taylor Hall said.
Julian’s classmates are in awe of that continuing legacy.
“That was his purpose. Julian was sent on this earth, for one reason,” Jude Smith said. “No matter how sad it makes me that he’s not here today, and he would have had such an incredible life, he’s saving more people than any of us ever could.”
His classmates say they think of Julian every day. None of them chose the pain of losing Julian, but his family and friends continue to choose what they do with it.