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Holding out hope

Sammy Stiles, age three, was born with spina bifida. Several fundraisers are planned to help raise money for stem-cell treatments that could improve her quality of life.

Fundraisers may allow spina bifida victim Sammy Stiles to get stem-cell treatments

Staff Writer

Three-year-old Sammy Stiles is frilly and feisty. She has no problem digging in the dirt or decorating her blonde locks with a brightly-colored bow. Her five-year-old brother James, is her hero, and she never ceases to mimic his every move. She plays Nintendo, goes to preschool and always welcomes an opportunity to spend time with her dog, Annie, and cat, Tigger. Sammy loves life and doesn’t let the fact that she wears pink leg braces and has a permanently disabling birth defect steal her joy.
“She is happy and doesn’t let having spina bifida slow her down,” mother Jennifer Stiles said. “Samantha is aware that she’s different.”
According to the Spina Bifida Association website, the disease, which affects seven out of every 10,000 American births, is a “neural tube defect” that prevents the spinal column from completely closing, causing a number of other health-related problems.
Jennifer, a nurse at Carolinas Medical Center-Lincoln, is familiar with the medical world, but that didn’t keep her from feeling unnerved when the doctor told her at 17 weeks into pregnancy that she had elevated levels in her lab work.
Her job title and experience again provided little comfort when further tests confirmed her fears — her unborn daughter had spina bifida. Jennifer said it had been her choice to do the lab work, which tests for spina bifida, Down syndrome and other neural tube defects.
She and her husband Jamie are currently in the process of raising funds to pay for stem cell treatment for Sammy. The couple decided to follow through with the treatment option just two months ago, after having heard several success stories.
They are positive Sammy needs the treatment; the only question that lingers is whether treatment will be given at home or abroad.
Jennifer noted that there are minimal side effects associated with the surgery, some of which include nausea, headaches and rashes.
It will also be the second time the local toddler’s gone under the knife for her disease. She first received surgery only a couple hours after birth, Jennifer said.
She views her daughter’s limited amount of surgical procedures as a blessing in disguise, especially for a child with such a crippling disease.
“Sammy has been lucky because she hasn’t needed a shunt and so far has had no detethering of the spinal cord,” Jennifer said. “People with spina bifida usually have many surgeries throughout life.”
Currently, the Stiles are weighing the pros and cons of American-based physicians vs. medical experts and treatment options in China and Mexico. They hope that by summer, Sammy can get the treatment she needs to gain strength in her legs and feet.
“Samantha’s ankles are weaker than most,” Jennifer said. “It would be great to lessen the braces or get rid of them all together and for Sam to walk independently.”
Once funding arrives from three local fundraisers this spring, the family will choose the right treatment regime for Sammy, Jennifer noted.
She pointed out that China has used stem-cell treatment to care for more than 12,000 people with a variety of diseases including spina bifida, ALS and cerebral palsy but that stem cell trials have only been done on one spina bifida patient in the United States. However, she added that stem-cell treatment has been done across the country on patients suffering from cerebral palsy, Parkinson’s and other diseases.
“We are not 100 percent sure on where we’ll end up going, but it’ll be somewhere,” Jennifer said.
The Stiles family is set to hold a BBQ fundraiser in their community on Saturday, followed by a silent auction and Poker Run that will hit various locations across Lincoln County on April 21. A week later, they plan to host a yard sale.
Jennifer said their target fundraising goal rests roughly around $40,000, which would not only cover the cost of a 40-day stay in China or two-day trip to Mexico but also additional therapy and medical equipment.
While Sammy often asks questions about why she can’t walk or use the restroom by herself, she remains unusually calm during doctor visits.
“She just sits there while the orthotist wraps her legs and cuts off the molds,” Jennifer said.
Because Jennifer believes the surrounding community has limited knowledge about spina bifida, she’s made it her mission to combat the public’s ignorance as well as her own by staying informed and on top of medical data through extensive research and a variety of support groups.
“I use the opportunity when someone asks, ‘What’s wrong with her,’ or something similar…to educate them,” she said. “I don’t get upset when people stare; I just wish they would ask so I can tell them.”
To make a donation for Sammy’s treatment, visit www.giveforward.com/pinkwalkingstix or mail check or cash to P.O. Box 64, Alexis, N.C. 28006.  For more information on upcoming fundraisers, contact Jennifer Stiles at pinkwalkingstix@yahoo.com.

Image courtesy of Contributed

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