Walk with Easter Seals

Published 11:06 am Friday, February 19, 2010

Sitting in her neon pink and green bedroom in Alabaster, 9-year-old Caroline Long chatted with her mother about her dad’s favorite NFL team, the New Orleans Saints, and about her favorite songs.

“We had accepted that she was never going to be able to communicate with us,” said Caroline’s mother, Drew Ann. “It was just overwhelming when we found out there was now another way for us to connect with her.”

Caroline was born with a genetic mutation and rare immune system disease that left her unable to talk or walk. When she was just 15 months old, she began getting therapy through Easter Seals.

Last July, Easter Seals provided Caroline with an augmentative communication device that she can control with her eyes.

The Longs knew their daughter’s body language and behaviors well enough to know when she was hungry or tired. They didn’t know, however, exactly how much their daughter knew about the world around her. The communication device opened their eyes.

“She really was retaining all this information and then finally at 9 years old she could come out and let the world know what she knew,” Drew Ann said.

The first question they asked her was if she knew the difference between a red card and a green card. She knew immediately.

She knows all the primary colors, in fact. She also knows the family dog, her favorite songs, objects around her and more.

Now, instead of her teachers trying to work with her solely on motor skills, like holding a fork, they now work with Caroline on more appropriate knowledge.

This device changed the Longs’ life. However, they couldn’t have easily provided the device for Caroline on their own.

A device like this costs around $20,000 — an amount Easter Seals of the Birmingham Area covered for the family. In the past year, Easter Seals saw 380 children. More than 50 percent of those had insufficient insurance. The organization paid out $190,000 last year for services.

“We receive no state or federal funding,” said Kelli Keith, director of marketing and development. “Therefore, our Walk With Me event is vital to our survival.”

Easter Seals will host its fourth-annual Walk With Me event March 6 at Veteran’s Park in Alabaster.

Caroline will be one of four ambassadors for the event.

The other Walk With Me ambassadors include 9-year-old Anthony, 10-year-old Colby and 9-year-old Harrison.

Anthony was just 2 when his mother realized something was different about her child. Doctors originally told his parents Anthony would never be able to walk or even sit up by himself.

Anthony began receiving speech, occupational and physical therapy at Easter Seals two and a half years ago. Now, Anthony can sit up, stand and raise his arms. He uses a device, provided by Easter Seals, to communicate.

Colby, too, needed help communicating his abilities to the world around him. After five years at Easter Seals, he now uses a device called a Dyna-Vox to speak more clearly to others. Keith said the device lets this curious boy ask any questions he wants.

Finally, artistically talented Harrison brings joy to the Easter Seals family with his energy. Harrison was diagnosed at 3 years old with autism and hyperplexia. He receives speech and occupational therapy.

Keith encourages community members to help keep the organization’s work possible by participating in Walk With Me.

The walk will be a family-friendly 1.9-mile course. All walkers will have the opportunity to meet their personal honorary ambassador before the event.

After the walk, participants will enjoy refreshments, live music, moonwalk, face painting. Participation is free, but walkers are encouraged to raise money. Each participant raising a minimum of $30 will receive an official “WALK WITH ME” T-shirt. To participate, call Keith at 314-2187 or by visiting Eastersealsbham.org.