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Armstrong rallies for family of child with Dravet Syndrome

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Saturday, May 3, 2014, 12:01 a.m.
 

People throughout Armstrong County are rallying around Allie Delp, a 22-month-old Ford City girl who is battling Dravet Syndrome — a rare disorder that causes seizures and other developmental problems.

Since a fundraising drive started in March, Allie's parents, Richard and Amanda Delp, have received thousands of dollars in donations to help cover the child's expenses.

“We've had individuals and groups sending us checks of $20 here, or $50 there, whatever they can give, which we really appreciate,” Amanda said. “It's just nice to know there are so many out there who care.”

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.

In March, the Delp family sold baked goods in hopes of raising $400 to purchase custom-made cooling vests, a belt to protect her feeding tube and other items to help their daughter. They were overwhelmed when they raised $1,800, Amanda said.

“We were able to purchase everything she needed,” Amanda said. “But it's not just the financial help we've gotten that is nice. It is also the emotional support and all the people who have reached out to help us.

“It's amazing to know there's that many people who care and are pulling together to help out when they've never even met Allie in person.”

Beth Jack, a preschool teacher at Divine Redeemer Catholic School in Ford City, said her class of 4-year-old students did chores around their homes to raise money for the Delp family. Their goal was to buy gift cards for gasoline to cover their trips to and from the hospital in Pittsburgh.

“I told them about Allie, and that she was very sick,” Jack said. “They wanted to donate to a local family, so they knew they would really be making a difference in their own community.”

The students bought the Delp family $75 in gift cards, which they plan to give to the family next week.

Ruth Sulava, a member of the special projects group of Christ the King Church in Leechburg, helped make a quilt for Allie, which they sent with a $25 donation. The group gives quilts to babies when they're baptized, or to families who are going through hard times.

“The ladies in the group know what it's like to face problems, so we always try to do something nice to let people know we care,” Sulava said. “When it's a child, it especially grabs at your heart and makes you want to do more.”

While the community continues to support Allie, her seizures have worsened.

In April, Allie had 82 seizures. The sunlight caused Allie to seize almost every time she went outdoors, Amanda said.

Amanda plans to get Allie a pair of blue-tinted, polarized glasses, which could help reduce sunlight-induced seizures. They cost $500, she said.

“It's another expense not covered by insurance, but it's nice to know I can write out a check to help her,” Amanda said. “Without the help, we would have gotten them eventually, but it would have taken us a while to work it into our household budget.”

The Delp family plans to take Allie to see a specialist to determine if she qualifies for vagus nerve stimulation surgery, which uses electrical pulses to help control her seizures.

“It's been very scary,” Amanda said. “We have to do something to get these seizures under control, because if we don't, there's really no telling what the future holds.”

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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