Hewitt: Girl with rare disease plans more pool time this summer

(Courtesy photo)
(Courtesy photo)(KWTX)
Published: Jun. 18, 2018 at 6:04 PM CDT
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Faith Fortenberry, a young Hewitt girl with a rare neuromuscular disease, plans to have a lot more pool time this summer after her parents say a potentially life-saving drug made it possible for her to get in a swimming pool and enjoy it like she never has before.

“Usually have to hold her or put her in some kind of floating device,” her mother, Leeann said.

“She wanted to branch out and try to swim on her own which made us very nervous, but I let her and she was totally able to keep her head above water and her body in the water. Normally she would just go headfirst and have no control whatsoever.”

Faith, 6, was born with spinal muscular atrophy or SMA, a rare and sometimes fatal disease that causes muscle wasting and weakness and makes every day a struggle.

In May of 2017 after months of back and forth with insurance providers over the approval of the expensive new medication, Faith started Spinraza, the first and only treatment to be FDA-approved for her condition.

Her mother says in 13 months, her daughter has experienced many “firsts.”

“I am no longer having to roll her every couple of hours in her bed at night since she is able to write herself," Leeann said.

"She is able to open markers and use scissors and better than ever before. She doesn't tire as easily as she used to as her lungs are stronger and can carry her better through the day.”

But one thing she hadn’t yet experienced yet is summer with a full year of treatment under her belt.

Faith took her first swim as she and her family attended a conference in Dallas for those from around the world living with SMA.

“Unbelievable and something that we thought she would never be able to do,’ Leeann said.

“We still have a way to go but I plan to get her in swimming lessons soon with someone that has a background with special needs kids since she is fully capable of learning to swim.”

Faith will receive her seventh injection of Spinraza next Tuesday, marking the beginning of her second year on the drug.

The soon to be second grader at South Bosque Elementary in the Midway ISD has also been chosen as the national ambassador for the Muscular Dystrophy Association.