Grandparents' mission: Find a bone marrow match for their grandson

- Like most grandparents, Sherry Sims and Ron Gillaspy love doting on their 9-year-old grandson Alex.   

"This is my favorite picture. It's Alex's first Christmas," said Sims, as she stared at old, framed photos.

Alex Sims captured his grandparents' hearts from birth, but at an early age, they realized something was different about him.

"He had muscle problems and muscle weakness. He had constant intestinal problems. At one point, he lost most of his hair," explained Sims.

By 2 years old, Alex was still unable to walk. Sims' son, Brandon, who is a single dad, took Alex to countless doctors from his hometown of St. Louis to Seattle.

"At about 2½, Alex got very ill. He was diagnosed with diabetes," continued Sims.

Going on insulin didn't cure him. Nearly a year later, a doctor recommended that both of his parents get a DNA test.  It solved the mystery.

Alex had IPEX Syndrome, a rare immune system disorder passed down through a mother's genes.

"There's only been 200 diagnosed cases in the world, in a world of 7.5 billion people," Sims explained.

While there's no known cure, the closest thing to it to date is a bone marrow transplant. Alex has no family members that are a match. His grandparents said the older he gets, the more their concerns grow about his long-term health without a transplant.

"It's a race against the clock. When he gets sick, then it's a big problem. When is that time going to happen that he gets sick and boom, now he has to have that transplant?" wondered Sims.

The couple has refused to sit around waiting for a match. They're working to make it happen themselves.

Although they live in Bradenton, they've gotten certified to swab people's mouths with Q-tips to get them added to the National Bone Marrow Registry. 

Finding people who met the age criteria is difficult for them.

"We're a little bit older and we're retired. Our friends are mostly our age. It's hard to find people that are 18 to 44, which is the age range," said Gillaspy.

They spend 40 hours a week planning fundraisers for Alex's medical bills, and you'll find his posters hanging around the city and in local Winn-Dixie grocery stores.

The couple has raise about $53,000 and swabbed more than 400 people by going to restaurants, store parking lots and large, public events to share Alex's story.

"We usually just ask them if they would spend five minutes to save this child's life," Sims explained, holding a poster with Alex's picture.

They're still searching for Alex's match. According to Sims, there are currently an estimated nine boys living with IPEX in the world, and most of them have had transplants.

If a match is found, Alex's bone marrow transplant surgery could cost an estimated $800,000.

The couple is hoping that by swabbing and registering every person they encounter, they can not only save Alex's life, but save the lives of other children searching for their matches as well.

"It could be you. It could be somebody across town. It could be somebody in Germany. It's just that needle in a haystack," said Sims.

For information on future fundraisers and swab events for Alex, contact Sherry Sims at 941-527-1403 or cas575@aol.com. For more information on the National Bone Marrow registry, visit http://join.bethematch.org/loveforalex.

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