Share This Page

Ford City couple plans fundraiser for baby diagnosed with Dravet Syndrome

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

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.

TribLIVE commenting policy

You are solely responsible for your comments and by using TribLive.com you agree to our Terms of Service.

We moderate comments. Our goal is to provide substantive commentary for a general readership. By screening submissions, we provide a space where readers can share intelligent and informed commentary that enhances the quality of our news and information.

While most comments will be posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can. Because of the volume of reader comments, we cannot review individual moderation decisions with readers.

We value thoughtful comments representing a range of views that make their point quickly and politely. We make an effort to protect discussions from repeated comments either by the same reader or different readers

We follow the same standards for taste as the daily newspaper. A few things we won't tolerate: personal attacks, obscenity, vulgarity, profanity (including expletives and letters followed by dashes), commercial promotion, impersonations, incoherence, proselytizing and SHOUTING. Don't include URLs to Web sites.

We do not edit comments. They are either approved or deleted. We reserve the right to edit a comment that is quoted or excerpted in an article. In this case, we may fix spelling and punctuation.

We welcome strong opinions and criticism of our work, but we don't want comments to become bogged down with discussions of our policies and we will moderate accordingly.

We appreciate it when readers and people quoted in articles or blog posts point out errors of fact or emphasis and will investigate all assertions. But these suggestions should be sent via e-mail. To avoid distracting other readers, we won't publish comments that suggest a correction. Instead, corrections will be made in a blog post or in an article.