Alice Eileen Silver | Alice's Army Facebook
Alice Eileen Silver | Alice's Army Facebook
An Iowa family is co-hosting a 5K race Oct. 3 at Pella Christian High School in Pella, Iowa, to raise funds and awareness for a cure to a rare life-threatening disease afflicting their 10-month-old girl from Altoona, KCCI reported.
Alice Eileen Silver, born on Nov. 4, 2020, is diagnosed with alternating hemiplegia of childhood, which impacts one in a million people. The disease causes episodes of painful body cramps and temporary paralysis. The more episodes endured, the higher the chances for long-term effects. Alice family is raising funds through events like “Race to End AHC” set for 1-3 p.m. at the high school in a desperate attempt to seek a cure through clinical trials.
Alice’s father Tim Silver is staying optimist.
“We’re so close to the cure,” he told KCCI.com. “There’s just a lack of awareness and the desperate need for the funding to get there.”
The family shared Alice’s story on alicesarmy.com where donations can be made. A week after her birth Alice suffered what he parents learned was a seizure. Initially, diagnosed as symptoms of acid reflux, the seizures continued and got more severe. After frequent trips to the hospital, visits with neurologists, and countless tests, she was diagnosed with ATP1A3 for alternating hemiplegia of childhood. The disease is so rare, parents are advised to seek out support groups and social media for information.
“Life after diagnosis for most AHC families is a battle,” the Silvers wrote on alicesarmy.com. “There are good days and bad, living in the unknown and having only hope to get you through each day. Alice is more than her diagnosis and she will be one of the many to help change the world.”
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