Fundraisers Set To Help Find A Cure For Alex

BRADENTON, FL – Alex Sims has defied the odds, and his Bradenton-area family is hoping to help him keep right on doing just that.

The 9-year-old St. Louis boy was diagnosed last year with IPEX syndrome, an extremely rare autoimmune disease with less than 200 cases diagnosed worldwide. Most children with IPEX die within their first or second year of life, but Alex was found to have a rare genotype of the disease.

Little is known about this disease, other than it is caused by a mutation of the FOXP3 gene that is passed from mothers to sons. For Alex, this means his regulatory T-cells malfunction when his immune system is triggered to fight an infection. Instead of stopping when the infection runs its course, they continue attacking healthy tissue and organs.

In his short life, Alex has dealt with pneumonia, intestinal problems, liver damage, skin rashes and numerous hospitalizations for unidentified viruses and diagnostic testing. Alex also developed Type 1 Diabetes at 2 years old, which is common in children with IPEX. He’s also endured diabetic complications, as well as deterioration of his joints, muscles and digestive track.

Because of the rare genotype he has, and because so few children have survived the disease, the few doctors who treat and research IPEX can’t predict Alex’s future. One thing that has been discovered recently is that bone marrow transplants have prolonged survival for IPEX victims.

According to Sherry Sims, Alex’s grandmother, Alex was placed on the bone marrow transplant list in November 2016 after a lengthy hospitalization for pneumonia and other viral infections.

In hopes of raising enough money for a bone marrow transplant, the Sims family has set up a website through the Children’s Organ Transplant Association. So far, the family has raised $13,377.31 of the $75,000 total they will need.

Several Bradenton-area restaurants and organizations have scheduled fundraisers to help Sims as well. The next event will be the first-ever Palma Sola Downs – Race for a Cure, which will take place at Bradenton VFW Post 10141, 5105 Manatee Ave. W., on Friday, May 12 at 4 p.m.

Alex’s great-grandfather, Melvin Whitaker of Palmetto, is a 93-year-old World War II veteran and has been a member of the VFW post for more than 60 years, as well as the local American Legion and DAV.

Recently, Whitaker’s VFW post held two fundraisers – an Easter Dinner and “Elvis is in the House,” which raised more than $1,400 in donations.

“Our families are so grateful for the kindness and compassion from local VFW and American Legion posts,” Sherry Sims said. “When I initially contacted Bradenton VFW Post 10141 to ask if they could help Alex … they didn’t hesitate for a second. The very first day I talked to them, they started planning fundraisers.”

Sherry Sims said Post 10141 has raised nearly $2,500 in total toward Alex’s medical bills.

“The VFW just opened up their arms and their hearts to Alex and his family, and say, ‘we aren’t done yet!’ We can’t thank them enough.”

The Palma Sola Downs event will feature a dinner with wings, fries and slaw for $6 from 4 to 6 p.m. Horse racing will begin at 7 p.m. There will also be a Crazy Bonnet Contest with a $50 gift certificate awarded to the winner.

Tickets can be purchased at VFW Post 10141, and advanced tickets are recommended.

The VFW Auxiliary also is planning future fundraisers, while another fundraiser is being planned at Fratello’s Chicago Pizzeria in Bradenton. Details on upcoming will be announced later this year.

According to COTA, transplant procedure costs range from $500,000 to more than $800,000. Once the transplant is complete, families face other transplant-related expenses, including medication, transportation and lodging, all while parents are out of work and living with the hospitalized child far from home.

COTA said the total lifetime out-of-pocket expenses for a transplant family can exceed $1 million.

“COTA has opened many doors for fundraising and offered the support and resources we needed to get our ‘COTA for Team Alex’ campaign started,” Sherry Sims said. “In a little more than a month, we have raised more than $13,000 for COTA in Alex’s honor.”

For more information about how to make a donation, visit www.COTAforTeamAlexS.com. To volunteer at local fundraising events, contact Sherry Sims at cas575@aol.com or (941) 527-1403.

Images: 1) Post VFW Post 10141 Auxiliary officers Kathy Zuckerman and Loy McColm introduce Sherry Sims, Alex’s grandmother; and Melvin and Wanda Whitaker, Alex’s great-grandparents. 2) Several members of the VFW Post 10141 Auxiliary organized the “Elvis is in the House” event. 3) Bill Lindsey appeared as Elvis Presley during the fundraiser for Alex Sims.

Images courtesy of Sherry Sims