9 y/o Alex Sims Has IPEX Syndrome, an Extremely Rare and Often Fatal Disease and Must Have a Bone Marrow Transplant to Survive.
In a world of 7.5 billion people, there are only 200 diagnosed cases of IPEX and only a handful of survivors and Alex Sims is one of them. For Alex, IPEX means muscle, joint, organ, skin and digestive problems and at 2 ½ years old he developed Type I Diabetes and has experienced countless hospitalizations. Doctors are very sure that the only hope for Alex’s survival is a bone marrow transplant so 11 months ago Alex was added to the national bone marrow registry, but to date there are no matches for Alex.
Alex’s grandparents, Sherry Sims and Ron Gillaspy are hosting swab events, hoping to find a donor for Alex. Donor screening is a cheek swab and takes only 5 minutes. The donor process is done by withdrawing the donor’s blood through an IV, spinning off the needed cells and returning the donor’s blood to their body through a second IV. That simple and almost painless procedure is the bone marrow donation that can save Alex’s life. Anyone between 18 and 44 y/o, in good health and willing to donate bone marrow can join the registry.
There are many expenses involved with IPEX treatment – extensive hospitalizations, specialists, weekly labs, immune suppressing medication and the bone marrow transplant itself, the costs of which is upwards of $800,000. In March 2017, Alex’s family and local volunteers teamed up with Children’s Organ Transplant Association (COTA) to help raise donations for Alex’s transplant expenses.
On Sunday, December 10, during the monthly all-you-can-eat Crab Fest, Swordfish Grill & Tiki Bar will host a “Swab Party, providing free, Be the Match swab testing, in hopes of finding a compatible donor for Alex. In addition, there will be a 50/50 and proceeds will be donated to “COTA for Team Alex”. Please come out and support Alex. For more information about Alex and IPEX, or to make a secure, tax free donation, visit Alex’s website at: www.COTAforTeamAlexS.com.
photos from Sherry Sims