Across Manatee County, a 9-year-old boy’s picture hangs from windows and is wrapped around jars, hoping for the right person to see it.
- 9-year-old boy with rare disease searches for bone marrow match across country
- Alex Sims, from St. Louis, diagnosed with IPEX
- Grandparents from Manatee County helping in search for match
Alex Sims was diagnosed with IPEX a little over a year ago. IPEX is a disease where the immune system attacks healthy organs.
The disease is so rare and lethal, it is a miracle that he is alive.
“It’s gotten to the point where doctors have put him on the bone marrow transplant list because they know that from this point forward the conditions are not going to better, they are only going to get worse,” said Brandon Sims, Alex's father.
“Doctors can’t quite tell you what to expect," he added. "You know more than half of the kids who have this disease die before the age of 5. So the fact that he was diagnosed when he was 8, you know, it’s a good sign he’s survived that long, but it’s a bad sign because you know the worst is still to come.”
Alex and his father live in St. Louis, but Alex’s grandparents live in Bradenton, which sparked the charge to find Alex’s match from across the country.
“So the first thing we did was we decided we would take our little coin boxes and go to the grocery stores and local businesses with posters and ask if we could leave donation boxes and posters,” Alex’s grandmother, Sherry Sims, said.
In just a matter of months, the "Team Alex" Campaign has raised almost $40,000 for Alex’s medical bills.
The family said local veterans organizations have also organized fundraisers for the little boy they have never met—in hopes of changing his life.
“What’s your hope in the end?” Sims asked his son. “To get better. To get better,” Alex replied.
To learn more about IPEX, donate to the campaign, or register for the bone marrow match, click here.