Family hopes to raise money for spina bifida treatments

by Josh Carpenter

Jennifer and Jamie Stiles were shocked to find the news that their daughter, Samantha, would be born with spina bifida in 2008. Nearly four years later, they’re raising money for stem cell treatments that could help with her mobility. (Courtesy of Jennifer Stiles)

ALEXIS – Jennifer Stiles and her husband Jamie were stunned when their doctor called about a problem with Jennifer’s pregnancy.

The Stiles lived happily in Alexis with their nearly 2-year-old son, James, and were expecting a baby girl in August of 2008. Life couldn’t get much better.

Jennifer Stiles was about 17 weeks into her pregnancy in February 2008 when she got the call from her doctor, who had some discouraging news.

Her daughter, Samantha, would be born with Spina bifida, a birth defect where the spinal canal and backbone don’t connect before birth.

“It definitely caught us off guard, I felt like my world was turned upside down,” Jennifer Stiles, a nurse at CMC-Lincoln, said. “I remember reading about it in a text book, but that was about it. We were just kind of in shock.”

“It was pretty rough, just dealing with the uncertainty and the unknown and what it was going to be like,” Jamie Stiles said. “Just the uncertainty.”

Doctors gave abortion and in utero surgery as optiona, but the Stiles opted to go through with a Caesarean section in August of that year.

Samantha was born with slight paralysis in the legs. The disease also affects her bowel and bladder control. In her ankles, she’s more or less paralyzed, her mother said.

Now 3, she maneuvers her way around with a pair of pink forearm crutches, which she’s been using for almost two years to help with her mobility.

“She hated them at first, but that’s her means of mobility so she uses them everywhere she goes,” Jennifer Stiles said. “She likes them now because they help her get around. She has some stickers on them … now everyone wants to put a sticker on the pink crutches.”

While she’s still got some hurdles to clear, the Stiles said their daughter’s attitude has remained positive during her first 3 1/2 years of life.

“She tells me ‘my legs don’t work’ which is hard to hear, but I just handle it in a positive way and talk her through those feelings,” Jennifer Stiles said.

“That’s just one thing we instill in both our kids is to be positive and do the best you can,” Jamie Stiles said. “She doesn’t let anything stop her, and that’s something we push for. She can do anything she wants to.”

Living with spina bifida used to mean a shorter lifespan, Jennifer Stiles said, but that’s not the case anymore.

Technology to fight the disease has developed, as has awareness about the ailment. Jennifer Stiles even started a Spina Bifida Charlotte community Facebook page.

“As a community, we try to get together, just to help as many people as possible,” she said. “We have play groups for the kids, cookouts and are also planning on opening a Spina Bifida Association chapter.”

The Stiles have also planned a number of spring events to help raise funds for a trip to China for stem cell treatments that could help with Samantha’s mobility.

The first event, a barbecue, takes place Saturday, March 10, at 11 a.m. on Main Street in Stanley at Napa Auto Parts. Whole Boston butts will be sold for $30, or half-pound barbecue plates for $7. Each plate includes slaw, beans and a roll. They’re also holding a poker run at the East Lincoln Fire Department on April 21.

The Stiles’ final planned fundraising event is a benefit yard sale April 28 at 215 N. Lane Road in Mt. Holly.

“We as a family stay positive and work through these times,” Jennifer Stiles said. “As her mother I don’t always have the right answer, we just work on things on a day to day basis and try to learn in the process and figure it out.”

Want to help?

To donate to Samantha’s cause, go to www.giveforward.com/pinkwalkingstix. For more information, email pinkwalkingstix@yahoo.com.

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