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Ford City couple plans fundraiser for baby diagnosed with Dravet Syndrome

Louis B. Ruediger | Leader Times
Richard and Amanda Delp of Ford City share a moment with their daughter, Allie, 21 months, who has a rare disease called Dravet syndrome, on Thursday, March 27, 2014.

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Saturday, March 29, 2014, 12:31 a.m.
 

Allie Delp hasn't had an easy go at life.

In her 21 months, the girl from Ford City has had about 260 seizures triggered by a multitude of things — from being too hot or cold, to blinking or bright lights. Doctors diagnosed her with Dravet Syndrome, a rare disorder that hinders developments and has left her with a feeding tube surgically implanted into her belly.

Her parents, Richard and Amanda, will host a bake sale from 10 a.m. to 2 p.m. on Saturday in the Ford City Foodland to raise money to purchase custom-made cooling vests, a belt to protect her feeding tube and other items to help their daughter.

“We just need a little help,” Amanda said.

Dravet Syndrome is a form of epilepsy that develops in infants and causes problems with language and speech development, growth and nutrition, sleeping and basic movement and balance. It leaves them susceptible to chronic infections.

Amanda said Allie had her first seizure when she was four months old.

“I was in denial that my little baby was seizing in my arms because up until that point, she'd been a perfectly healthy little girl,” Amanda said. “But I knew something was wrong because a baby does not seize for just no reason.”

Richard said he and Amanda began researching seizure disorders and found an entry on Dravet Syndrome.

“We kind of knew what it was before the actual diagnosis,” Richard said.

Children never outgrow Dravet Syndrome, and doctors forecasted Allie's symptoms would get worse as she gets older.

“When they hit two, they develop different types of seizures, and their developmental and motor skills begin to regress,” Amanda said. “And there is nothing that we can do other than just love her. It's all we can do.”

Although insurance covers the majority of Allie's treatments, it will not cover the cost of the cooling vests or a feeding tube belt. The Delp family incurs about $500 per month in costs for Allie's condition not covered by insurance.

Eventually, the Delp family hopes to get Allie a seizure-detecting dog, which is specially trained to recognize the symptoms of seizures and alert the family. Each dog costs about $13,000, which is not covered by insurance.

“We're afraid of what the future might hold, so we're definitely going to have to keep fundraising so we can be prepared to help her,” Amanda said.

Brad Pedersen is a staff writer for Trib Total Media. He can be reached at 724-543-1303, ext. 1337, or bpedersen@tribweb.com.

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