Local organization hosts benefit in Harvey to help two kids with rare genetic disease
HARVEY, La. (WGNO) — If you’re in the spirit of giving, there’s a local family that could really use your help. Two toddlers have been diagnosed with a rare genetic disease and WGNO’s Kenny Lopez shows us how the community is stepping up to help.
My Padnas is a local organization that’s sparing its time and putting love into action by helping a local family in need.
“We look for people stressed out with financial needs and we are trying to make it easier and better for them to try to take the burden off financial wise,” said My Padnas board member Tony Damico.
My Padnas is throwing a bowling benefit at Westside Lanes with raffles, prizes, weekend getaways and more to help the Cheramie family.
The benefit is a fundraiser to help 3-year-old Kai, and 11-month-old Ura, who have both been diagnosed with Infantile Neuroaxonal Dystrophy or INAD.
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“It is a neurological disease that causes rapid progression of mental and physical abilities with a life expectancy of five to 10 years,” Alexi Cheramie, Kai and Ura’s mother said.
Cheramie said that INAD is a genetic disease that’s very rare, with only 200 kids worldwide being diagnosed.
“Both me and dad are recessive carriers and we each have a good gene and then one affected with the disease,” she said.
She went on to say that kids with INAD are born like typical children but then symptoms start developing between 16 to 18 months.
“Due to rarity, there’s no government assistance for funding,” she said.
The bowling benefit aims to strike out some of the stress of the medical expenses.
The event is on Saturday, April 20 at 1 p.m. at Westside Lines, 3715 Westbank Expressway.
In addition to bowing, they will have corn hole, a 50/50 raffle and prize packages like Jazz Fest packages. For more information visit their Facebook.
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