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An Altoona family is racing against time to treat their baby girl, who has a rare disorder. They’re trying to bring a cure to clinical trials.Right now, there is no cure for 10-month-old Alice’s condition that causes temporary paralysis.It’s a one-in-a-million diagnosis. Because it’s so rare, it falls on families to work directly with doctors on treatments and fundraising.Tim Silver says his daughter’s smile and giggle light up a room. He doesn’t want that to go away.She was born with Alternating Hemiplegia of Childhood, or AHC. It means Alice suffers episodes of uncontrollable limb movements and painful full-body cramps.The more episodes she has, the greater chance for long-term side effects.”We’re so close to the cure. There’s just the lack of awareness and the desperate need for the funding to get there,” Silver said.Their hope is in gene therapy and editing procedures. It takes money to make that happen. That’s why they’re co-hosting a Race to End AHC with another Iowa family impacted by the disorder. The 5K is Oct. 3, from 1 p.m. to 3 p.m. at Pella Christian High School.You can find out more or donate at alicesarmy.com.

An Altoona family is racing against time to treat their baby girl, who has a rare disorder. They’re trying to bring a cure to clinical trials.

Right now, there is no cure for 10-month-old Alice’s condition that causes temporary paralysis.

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It’s a one-in-a-million diagnosis. Because it’s so rare, it falls on families to work directly with doctors on treatments and fundraising.

Tim Silver says his daughter’s smile and giggle light up a room. He doesn’t want that to go away.

She was born with Alternating Hemiplegia of Childhood, or AHC. It means Alice suffers episodes of uncontrollable limb movements and painful full-body cramps.

The more episodes she has, the greater chance for long-term side effects.

“We’re so close to the cure. There’s just the lack of awareness and the desperate need for the funding to get there,” Silver said.

Their hope is in gene therapy and editing procedures. It takes money to make that happen.

That’s why they’re co-hosting a Race to End AHC with another Iowa family impacted by the disorder. The 5K is Oct. 3, from 1 p.m. to 3 p.m. at Pella Christian High School.

You can find out more or donate at alicesarmy.com.

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