A Bay Area family is working to raise money for a 3-year-old child who is fighting a rare medical condition called Marfan’s Syndrome.
Marfan Syndrome is a life-threatening genetic condition of the connective tissue.
The family’s 3-year-old son was diagnosed just last year.
You’d never guess little James Richardson is living with a rare genetic condition.
Marfan patients tend to grow very tall with multiple orthopedic issues but it’s what Marfan did to James’ eyes and heart which is most concerning.
“The big one we saw was his vision, his lenses are dislocated in his eyes which is common and James is very tall and thin,” Allison Pullins, James’ mother, said.
“I get medicine in the morning and medicine at night. That’s right James is on medication to help with his heart,” James said.
In James’ case it was a spontaneous mutation. His mother says he also has problems with his skeletal system.
“Being a mom or a dad is hard in the first place and managing a child with a chronic life-threatening condition can be challenging, but we’ve realized over the past year since we’ve found out about James’ condition what an amazing community we have,” Pullins said.
Ever since James’ diagnosis, Pullins has been fundraising and volunteering her time to advance research and advocate for those affected by the medical condition.
Last year, she raised over $11,000 for the Marfan Foundation. She was also a part of the walk at Golden Gate Park Saturday afternoon and James was more than excited to participate in the walk again with mom, dad, little sister Naomi and their dog Hatch.
James even got to cut the ribbon for the event.
Pullins: “Do you remember walking in Sacramento?
Pullins: “Let me ask you this, do you remember cutting the ribbon?
Pullins: “Do you know what?”
Pullins: “You get to do that tomorrow.”
James: “Oh my gosh.”
This was the first ever Walk for Victory in the Bay Area. The walk kicked off at noon on Saturday.
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