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It gradually took Julian\u2019s hearing, vision, and muscle and brain function. Eventually, it took his life.<\/p>\n
He was only 8 when he died. Today, Julian would be 18.<\/p>\n
And the children who knew and loved him in first grade are now high school seniors, approaching a milestone he never got to experience.<\/p>\n
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\u2019s friends. And they didn’t need an adult to tell them how to treat him.<\/p>\n
It was a remarkable thing to witness, said their former teacher Toyia Crisp.<\/p>\n
\u201cI 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,\u201d Crisp said.<\/p>\n
“I never knew it was goodbye,\u201d said Cullen Farris who is now in his senior year at Lake Highlands High School \u201cI knew he was sick. I didn\u2019t really know how sick he was. I didn\u2019t know that was the last moment we were all going to have with him.”<\/p>\n
Julian\u2019s 18th birthday provided reason for a reunion between Crisp and her former students, who are now young adults.<\/p>\n
\u201cI genuinely feel like it was orchestrated universally for him to be in Toyia\u2019s class, for those children to be part of his life, for him to have lived the life he lived,\u201d said Julian\u2019s mother Jenna Kampfschulte. \u201cIt\u2019s really kind of beautiful.\u201d<\/p>\n
Every year, Julian\u2019s family holds a fundraising workout around his birthday.<\/p>\n
The funds not only help with ALD research.<\/p>\n
They are working to fund multiple scholarships for the students who loved Julian through his heartbreaking decline.<\/p>\n
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.<\/p>\n
\u201cI wish this was his birthday party,\u201d said Julian\u2019s dad Kurt Kampfschulte. \u201cBut it\u2019s 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.\u201d<\/p>\n
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.<\/p>\n
Julian\u2019s family helped push Texas to include ALD in its newborn screening program. That effort has already had an impact remarkably close to home.<\/p>\n
Tyler and Taylor Hall\u2019s son, William, was diagnosed through the state’s newborn screening. At the time of the diagnosis, they lives across the street from the Kampfschulte\u2019s previous home. The Halls launched an aggressive fundraising campaign to help advance the search for a cure.<\/p>\n
\u201cA 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,\u201d Tyler Hall said.<\/p>\n
William takes medication three times every day, but he\u2019s thriving.<\/p>\n
\u201cHe\u2019s like every other 2-year-old. He\u2019s busy, loves cars and Spider-Man, and he keeps us on our toes,\u201d Taylor Hall said.<\/p>\n
Julian\u2019s classmates are in awe of that continuing legacy.<\/p>\n
\u201cThat was his purpose. Julian was sent on this earth, for one reason,\u201d Jude Smith said. \u201cNo matter how sad it makes me that he\u2019s not here today, and he would have had such an incredible life, he\u2019s saving more people than any of us ever could.\u201d<\/p>\n
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.<\/p>\n","protected":false},"excerpt":{"rendered":"Friends who embraced Julian Kampfschulte in first grade are now 18. His family is raising money not only…\n","protected":false},"author":2,"featured_media":464545,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[102,104,103],"class_list":["post-464544","post","type-post","status-publish","format-standard","has-post-thumbnail","category-dallas","tag-dallas","tag-dallas-headlines","tag-dallas-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/464544","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/comments?post=464544"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/464544\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media\/464545"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media?parent=464544"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/categories?post=464544"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/tags?post=464544"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}