Belmax De Jesus was a star runner at Rutgers University. This weekend, she will be running the Philadelphia Marathon in order to raise money for her young son’s extremely rare and deadly disease.
Belmax is a single mother from Princeton, struggling to raise 8-year-old Jaxon, who suffers from peroxisomal disorders. These large groups of genetic disorders make it difficult for the peroxisome to function the way it needs to, which leads to a number of body issues. To learn more about peroxisomal disorders, click here.
Jaxson’s early childhood was normal. He was active and energetic like his mother, but his good health didn’t last. Belmax began to notice his symptoms when he was 5 years old and his legs began to give out after running around. After that, his body began to slowly break down. Not even the doctors could explain why. For two years, it was a mystery.
Finally, a specialist from Canada was able to diagnose Jaxson with peroxisomal disorders. These disorders are so rare that less than one in twenty thousand children will be born with them.
Belmax went through a rough period after she learned the diagnosis. She did her research and saw the outcome of other children with the disorders, and was stunned to hear that there was no cure. It was hard for her to stay positive.
Most children with the disorder don’t live for over a year after it appears. She’s even gone as far as the Dominican Republic for stem cell surgery, among other treatments. Because the therapies aren’t covered by any insurance, it’s made it all the more challenging.
Belmax will be putting on her running shoes, and after rigorous and passionate training, she will be doing what she does best to help raise money and awareness about the disorder.
“At the end of the day anything is possible, so I’m going to keep trying,” she said in an interview with News 12 New Jersey. “I don’t know, who knows if there’s a scientist out there that can find the cure.”
