Bradenton couple continues to search for bone marrow donor for 9-year-old grandson

Alex Sims, 9, who suffers from an often fatal immune system disorder called IPEX Syndrome, wasn’t in Manatee County on Sunday, about 1,000 people attended a ‘swab’ party and fundraiser in his honor at Woody’s River Roo Pub & Grill in Ellenton.

Twenty-five people put Q-tip-like testers in their mouths and swabbed their cheeks to see if they could be the long-awaited bone marrow donor match that Alex needs for his survival.

Hundreds bought raffle tickets to raise money for Alex’s bone marrow surgery when a donor is found, which could cost more than $800,000.

Sherry Sims and Ron Gillaspy, Alex’s grandparents who live in northwest Bradenton, are one reason why Alex is becoming a celebrity in Manatee even though the youngster lives in St. Louis with his father, Brandon, according to event volunteer Mike Gillum of Palmetto.

“The grandparents are amazing people,” said Gillum, who, at 46, is too old by two years to be Alex’s bone marrow donor. But he helped out by selling raffle tickets out of a plastic bucket at Woody’s, where general manager Corey Davis will donate a portion of the roughly $10 from each order of Woody’s famous “grouper bites” to Alex’s surgery fund.

Gillum said people can’t help but admire this couple who, for about the last seven months, have been putting up posters, organizing fundraising events and hosting donor testing events throughout Manatee County.

Including Sunday’s event, Sims and company have raised roughly $53,000 and tested about 425 people as they continue to search for a match.

Sims and Gillaspy moved to Florida about a year before Alex was diagnosed with IPEX.

“We’re not there to help Alex and Brandon in St. Louis, so we’re doing all the fundraising and bone marrow testing here,” Sherry Sims said.

The couple is working with the Children’s Organ Transplant Association (COTA) to help find a match for Alex and to raise money for his surgery.

Right now, among the roughly 40,000 entries in the national bone marrow registry, there is no match for Alex, Sherry Sims said.

“When he was born Alex had critical problems,” Sims added. “We never got a diagnosis for a long time. We went from doctor to doctor trying to find out what was wrong with him. He had muscle weakness and, at two and a half, was diagnosed with juvenile diabetes. He had skin issues, stomach and intestinal issues. In hindsight, we now know that all of those are IPEX symptoms.”

Alex’s immune system continues to attack his organs long after it has attacked the simple cold virus or relatively harmless bacteria Alex might acquire, Sherry Sims said.

Because of IPEX, Alex’s liver, pancreas, skin and other organs have been compromised. Alex is a full-blown diabetic and takes seven shots a day, Gillaspy said.

Yet, the genes for character and personality are apparently working perfectly in Alex.

“Alex is the most loving child you would ever want to meet,” Gillaspy said. “He is just absolutely a joy to be around. He is unbelievable. He never complains about anything.”

At a table at Woody’s on Sunday, Barbara Nonell of Bradenton sat with her daughters, Tiffany Sander and Kristen Laboy, and their families.

Nonell’s husband, David, is the lead guitarist with The Band Tidewater, which performed at Woody’s on Sunday.

Blessings of health are an excellent reason to swab, said Barbara Nonell, who was delighted when both her daughters and son-in-laws agreed to swab for Alex on Sunday.

“I feel sad and I hope he can find someone who can be a donor so he can have a normal life and live like kids should live and not have to worry about that,” said Barbara Nonell.

“I think about my grandsons and how blessed I am that they are healthy,” Nonell added, looking over at Bennett Nonell, 6, and Ryland Nonell, 8. “This could happen to anyone, really. We never know.”

For information on future swab events and fundraisers or to donate, contact Sherry Sims at 941-527-1403 or cas575@aol.com or go to COTAforTeamAlexS.com.

This story was originally published October 29, 2017 at 8:34 PM with the headline "Bradenton couple continues to search for bone marrow donor for 9-year-old grandson."