Teen with rare disease surprised with new wheelchair: ‘It was great to see her smile’
Teen with rare disease is surprised with a new wheelchair.
By Susan-Elizabeth Littlefield
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HOPKINS, Minnesota (WCCO) — There’s a lot of learning going on in one Hopkins classroom. Ashley is all ears.
“She’s determined, because if there’s something she really wants to do or communicate, she’ll stick with it until she gets her message across,” said teacher Lori Komoto.
The sophomore is known for her drive, and her charm.
“She very popular, she’s so fun, she’s so silly,” Komoto said.
She is strong, but she is sick. Ashley used to be the picture of health, a young gymnast. But over time, instead of controlling her body, it started controlling her.
“I knew the moment I saw her,” said teacher Judy Griffin.
She has Huntington’s disease, which mimics Alzheimer’s disease, ALS and Parkinson’s disease. It’s rare in adults, and almost unheard of in kids. But by chance, Ashley’s new teacher who recently moved here had heard of it.
“Unfortunately, Ashley’s the second juvenile Huntington’s case that I have known,” Griffin said. “The first one was a young girl in Michigan, and I watched Briana deteriorate and eventually die from the disease. And through Briana’s sister Shelby, I learned a great deal about Huntington’s.”
She learned it’s swift and unforgiving.
“Huntington’s is a progressive disease, so as she gets older, she’ll lose some function, her posture will continue to deteriorate,” said school physical therapist Tiffany Moriarty.
That means her wheelchair situation is also deteriorating. They have had to use actual belts to keep her upright.
“She just needs more support in her wheelchair, so when she has those Korea movement or even for the posture, she’s more supported,” Moriarty said.
She says a new wheelchair “would be huge” for Ashley.
“We’re just worried about safety, like throughout the school, on the bus, and then again to help the family out,” Komoto said. “To be honest, it’s physically taxing on us so I can’t imagine for them.”
Griffin shared her worries with the only people she knew that would understand — the family of Briana. Her sister in Michigan, Shelby Lentz, wanted to help. Her Huntington’s nonprofit, called Champions For HD, ordered the $8,000 wheelchair.
“Originally when we got the initial bill, we went, ‘OK, it’s a little bit more than what we were thinking, but we’re still gonna do it, we’re still gonna make it happen because we truly believe in this cause and in Ashley, and we want her to have the best wheelchair possible,’” Lentz said.
As a tribute to her own sister, Shelby flew to Minnesota to watch the surprise. And even though Ashley cannot talk, she made it clear that she is thrilled. Her family is pretty excited, too.
“It was great to see her smile, it was exactly what we needed,” said Emily Beard, Ashley’s sister.
It’s all thanks to a teacher who was in the right place at the right time, and a community who did the right thing. Ashley is now sitting where she’s supposed to be.
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