There are still moments when life feels normal inside of the Sink home. But for John and Katharine Sink, not a day goes by that they don’t think of the diagnosis doctors gave 10-year-old Declan six years ago.
“He was the one who initially called and found out. And so when I got home, well, he was pretty much on the floor,” said Katharine Sink.
“The doctors, really, they gave us an, ‘Oh, it’s terminal, and that’s all you really need to know until you come in and see us’,” added John Sink.
After looking for answers about Declan’s unexplained ear infections and delayed speech, the couple learned from a neurologist that Declan is one of the one-in-70,000 kids born in the U.S. with Sanfilippo syndrome.
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The fatal genetic disorder impacts the brain and nervous system.
“They regress. They go through dementia just like someone with Alzheimer’s does,” said Katharine. “I mean, he used to know his ABCs. He used to know his shapes and colors. He could talk, sing, and now, he can’t do any of it.”
There’s currently no FDA-approved treatment and no cure.
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While some diagnosed have lived into their 20s or 30s, most die as teenagers. Others haven’t survived as long as Declan.
“It’s pretty much, we can look into support systems for you. There’s palliative care. But that’s not something that we’re just going to be like, Okay, we’ll sit by and watch while it takes its course,” she said.
To raise awareness and to help fund a cure, on Saturday the family will host the third annual Do it for Declan 5K and Fun Run at Wylie’s Founder’s Park.
Over the last couple of years, the event has raised nearly $40,000 for the Cure Sanfilippo Foundation, a nonprofit that funds critical research for treatment and a cure.
The Sinks say they know it may not come fast enough for Declan. Still, they continue to fight.
“To know that he’s made such a profound impact on other people means that he will never be forgotten,” said Katharine.
Registration is open for the event online. It can also be done in person Saturday morning at 7:30 a.m.
The one-mile fun run begins at 8:30 a.m. and the 5K at 9:00 a.m.
