Meet the ambassador to Easterseals’ Walk With Me

Seaford resident Stevie Tull is the ambassador to Easterseals’ Walk With Me, a fundraiser. Courtesy of Easterseals.

Stevie Tull was just 7 months old when he started to benefit from programs provided by Easterseals Delaware & Maryland’s Eastern Shore . And now, three decades later, they are an essential part of the life of the Seaford resident.

Tull, 38, has Pelizaeus-Merzbacher disease, a rare neurological disorder that resembles cerebral palsy in its symptoms, said his father, Steve.

Stevie relies on a wheelchair, but even then can’t sit up on his own.

He’s legally blind.

He uses a straw to drink and a spoon to eat.

His fine motor skills are poor.

His ability to articulate is poor as well, and his inability to fill his lungs means “he runs out of air before he can complete a sentence,” he said.

“His greatest thing is his smile,” Steve said of his son. “He just captivates people. People regularly comment about that.”

And his hearing and his memory are excellent, his father added. “He understands everything you say.”

Stevie is getting attention because Easterseals has named him the ambassador for their annual Walk With Me & 5K Run Delmarva . The fundraising and awareness-raising run/walk starts at 3:30, with registration and activities start at 2:30 p.m. Oct. 20 at Baywood Greens in Long Neck.

Stevie will lead the walk, and he will also be featured at the nonprofit’s banquet that month. Steve said they’re working on preprogramming a device that they call a talker so that Stevie can deliver some remarks that they have yet to compose.

Stevie served as a co-ambassador eight or nine years ago.

After all those decades of help, Steve is very enthusiastic about what Easterseals offers to people to like Stevie. “There’s so much early intervention,” he said.

He’s also enthusiastic about the fundraising. “All the money that’s raised here stays here.”

Steve said that they have served on various boards and councils throughout the state to promote understanding of conditions like Stevie’s disorder.

The family has adopted their home to accommodate Stevie with a ramp for his wheelchair, a universal bathroom and pool out back (with a lift), where the buoyancy of being in water “gives him a sense of freedom,” Steve said.

Steve has also designed, built and adapted other homes for differently abled residents through his company, Efficient Home Solutions .

Stevie, like so many others, is a fan of technology, playing games like solitaire on his tablet and also scrolling through his Facebook feed.

Easterseals’ adult day program

In 2007, Stevie started participating in the Easterseals adult day program in Georgetown. That gives him the opportunity to socialize, and it gives his parents, Steve and Terry, much-needed breaks from full time caregiving.

Stevie’s disorder is caused by malformed myelin insulation around his nerves, “so the signals get confused and lost,” Steve said.

Stevie had his first seizure on June 14, 2019, and he was checked out at Nanticoke and flown to ChristianaCare for the removal of a cancerous brain tumor.

Since then, he’s been building back his strength and his involvement in the adult day program, Steve said, noting that he’s now attending four days a week. (It’s available 8:30 a.m. to 2 p.m. weekdays.)

“We have always been thankful for Easterseals,” Steve said. “Stevie loves the day program. It adds so much to his quality of life to go there. Without the day program, we would have no respite. It would wear us down. It would change the quality of our lives as well.”

Stevie also enjoys a week of adventure at Camp Fairlee , with the Easterseals program including fishing, crafts and other typical camp activities.

This year’s camp ended Friday, and the welcome-celebration included a cheeseburger from Sal’s Italian Restaurant and a lot of attention from Ginger Brady, the family’s Chesapeake Bay retriever. “She was all over him when he came back,” Steve said.