Photography by Fotocrew member Jared Rey.
It was the start of a new school year. A first grade classroom coming back to life with the chatter of students excited to see their friends again after another hot Texas summer. A playground once again filled with busy imaginations and little voices.
But this school year would be different for the Kampfschulte family. In November, parents Jenna and Kurt received a phone call from their son Julian’s teacher, concerned that he seemed to be having trouble hearing in class. Tests concluded that Julian has Adrenoleukodystrophy (ALD), a rare genetic degenerative brain disease. Symptoms include blindness, deafness, seizures, loss of muscle control, and progressive dementia.
Unfortunately there is no cure for ALD . . . . . and it is terminal.
The Kampfschultes have had little time to process Julian’s heartbreaking diagnosis. In just a matter of weeks, Julian lost his hearing completely and is now continuing to lose his eye sight. While he has learned some sign language, he now communicates mostly through a small white board.
With Julian’s health starting to deteriorate and the next year becoming increasingly uncertain, one thing is clear: time is precious. And in the midst of such an uncontrollable and unpredictable situation, Jenna knows the one thing they must do is make memories.
“We can’t treat his disease, so we’ll treat his life. We’ll make every day count.”
Jenna was determined to make this Christmas extra special for their family, and especially for Julian. With the help of family and friends, the Kampfschultes decided to organize a special Christmas party to celebrate and share with the incredible community who has rallied around them this fall.
Julian had just two requests: a bounce house and making gingerbread houses.
Check out the Kampfschultes’ Fotolanthropy film and photos to see what fun was had and who made a special appearance!
For more information on Julian’s journey, you can visit their Facebook page – Snuggle Julian. Information on donating to the Kampfschultes to assist them with medical expenses and related costs is available here.
Thank you Kampfschulte family for sharing your inspiring true story.
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