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

<p>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.</p>

News 12 Staff

Nov 17, 2017, 3:34 AM

Updated 2,370 days ago

Share:

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.


More from News 12
1:40
Phase 2 of Marcus Garvey extension project for extra affordable housing underway in Brownsville

Phase 2 of Marcus Garvey extension project for extra affordable housing underway in Brownsville

1:43
Warm conditions for NYC on Tuesday before spotty showers and cold temps tomorrow

Warm conditions for NYC on Tuesday before spotty showers and cold temps tomorrow

0:55
MTA to provide 60 new zero-emission buses for commuters

MTA to provide 60 new zero-emission buses for commuters

1:09
Mayor: New Brooklyn Marine Terminal project will modernize port, boost economy

Mayor: New Brooklyn Marine Terminal project will modernize port, boost economy

1:05
Community advocate talks combating teen violence amid surge of incidents across NYC

Community advocate talks combating teen violence amid surge of incidents across NYC

0:31
Survey: New York City ranks No. 12 on top summer travel destinations

Survey: New York City ranks No. 12 on top summer travel destinations

1:51
Bushwick Avenue tenant still searching for housing after apartment was destroyed by massive fire

Bushwick Avenue tenant still searching for housing after apartment was destroyed by massive fire

0:32
Officials: Man wanted for stealing $300,000 from Chase bank client in Canarsie

Officials: Man wanted for stealing $300,000 from Chase bank client in Canarsie

0:21
Officials: Armed man robs Kennedy Fried Chicken in Flatbush

Officials: Armed man robs Kennedy Fried Chicken in Flatbush

0:24
Authorities: 2 people steal woman’s credit card, go on shopping spree in Sheepshead Bay

Authorities: 2 people steal woman’s credit card, go on shopping spree in Sheepshead Bay

1:51
Investigation underway into fatal police-involved shooting of armed man in East Flatbush

Investigation underway into fatal police-involved shooting of armed man in East Flatbush

1:44
Bed-Stuy tennis coach loses concession rights on Jackie Robinson Courts

Bed-Stuy tennis coach loses concession rights on Jackie Robinson Courts

1:35
​​Families and alumni upset over closing of Flatbush Catholic school

​​Families and alumni upset over closing of Flatbush Catholic school

0:27
NYPD: 14-year-old charged for shooting at Brownsville business

NYPD: 14-year-old charged for shooting at Brownsville business

1:36
'Survivors Teach Students' program shows Downstate medical students the human side of ovarian cancer

'Survivors Teach Students' program shows Downstate medical students the human side of ovarian cancer

0:29
Mayor Adams: Thousands aided by city's expansion of infant health services

Mayor Adams: Thousands aided by city's expansion of infant health services

0:24
Police seek help identifying man found outside hospital in Brownsville

Police seek help identifying man found outside hospital in Brownsville

0:31
New York City launches citywide survey to assess needs of older residents

New York City launches citywide survey to assess needs of older residents

0:24
NYPD: 2 suspects wanted for assaulting 79-year-old man in Brownsville

NYPD: 2 suspects wanted for assaulting 79-year-old man in Brownsville

1:52
Music legend Paul McCartney responds to viral video of Brooklyn Beatles fan

Music legend Paul McCartney responds to viral video of Brooklyn Beatles fan