NJ mom to run Philly marathon to bring attention to rare disease

Posted: Updated:

A New Jersey mother and former Rutgers University running star will run the Philadelphia Marathon this weekend to raise awareness for a rare, deadly disease affecting her young son.

Belmax De Jesus, of Princeton, is a single mother. Her 8-year-old son Jaxson was diagnosed with Peroxisomal disorders, a rare group of conditions that ravage a person’s body.

Jaxson cannot walk or talk and needs constant care. De Jesus says that she started to notice symptoms when Jaxson was 5 years old.

“I noticed he would be running and it’s like, one of his legs would give out. He would start falling,” she says.

De Jesus says that Jaxson’s body started to break down, and no doctors could figure out why.

"Everything would come back normal,” she says. “So it was a mystery for two years.”

De Jesus says that it was a specialist in Canada who diagnosed Jaxson with Peroxisomal disorders. The conditions are so rare that if 4 million children are born this year, less than 100 will have the disorder.

"I kinda lost it for a little bit, because of what I’ve seen happen to so many of the children and knowing there is no cure right now,” De Jesus says. “It did take some of my hope away, and I just needed something to like bring me back.”

De Jesus says that most children with the disorder don’t live a year with it. She has tried many treatments, including stem cell surgery in the Dominican Republic. The therapies are not covered by insurance.

She will run the marathon to bring awareness about the disorder.

"At the end of the day anything is possible, so I’m going to keep trying,” she says. “I don’t know, who knows if there’s a scientist out there that can finds the cure.”

More information about Jaxson’s story and Peroxisomal disorders can be found HERE.

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