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Iowa Fact Sheet

As a young child, Grayson was very tall for his age. He didn’t take up walking without support right away, but physicians figured he had a lot more height to balance than his peers. At 15 months, he finally took to walking on his own, but it only lasted a couple of months.

When his balance became noticeably off and he went cross-eyed, his parents, Kristin and Dion, took him to the hospital. The neurologist felt confident that it must be a brain tumor. But when nothing turned up, they did a genetic screening two weeks later. That’s when Grayson was diagnosed with a devastating neurological condition: metachromatic leukodystrophy.

Cognitively, Grayson stood out from his peers. At the age of two, he had the capabilities of a four-year-old—singing nursery rhymes and the alphabet. But physically, he began falling behind. His walker was soon put away for good. The summer after being diagnosed, he could no longer sit up unsupported. Eventually, he also lost head control. And then, a case of rhinovirus and some respiratory problems led to his condition deteriorating even further.

But Grayson was a persistent, curious individual with a love of learning. Five months before he passed, he actively attended kindergarten. This enrichment brightened his mood. He also cared immensely for his loyal support dog, Milo. The two were like peas in a pod. When Grayson passed, Milo lost his favorite human. And Kristin and Dion lost their only child. The Schminkes cherish memories of their beloved son as they adjust to life without him.

 

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