9-Year-Old Eliciana “Lici” Gonzales was the 4th child in the world diagnosed with CAMK2B.Photo:LiciStrong/Facbook
LiciStrong/Facbook
A Wisconsin family held a fundraiser over the weekend for a 9-year-old girl who was diagnosed with a rare genetic disorder years ago.
In 2017, Eliciana “Lici” Gonzales was diagnosed with CAMK2B — making her the fourth person in the world at the time to receive the diagnosis, according to local stationCBS 58. Less than 300 people have since received the diagnosis.
After visiting a chiropractor, therapist, pediatrician and neurologist, the family took Lici to a genetics doctor, who referred her to the Undiagnosed Diseases Network. “Usually like 20,000 people apply for it a year and usually like 20 to 30 get approved and she was immediately approved," Amy told the outlet. Lici’s diagnosis came after she went to Boston Children’s Hospital in 2017.
The disorder, an abbreviation for calcium/calmodulin dependent protein kinase 2, impacts mobility and brain function.CAMK2.orgdescribes it as “a family of four similar proteins that are abundant in the brain and important for normal electrical signaling.”
9-Year-Old Eliciana “Lici” Gonzales was the 4th child in the world diagnosed with CAMK2B.LiciStrong/Facbook
Lici uses a wheelchair, can’t speak and is fed with a tube through her small intestine overnight — as she has a diet with no sugar, starch or lactose, her family told the outlet.
“Pretty much once she hit seven, eight-months-old, she just really never grew from there like mentally, physically," Amy said.
“She just wants to be like any other kid," she added. “She just can’t physically do everything, but she still wants to try.”
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On Saturday, the family held a fundraiser at The Lanes on 20 in Mt. Pleasant, Wisconsin, featuring a bags tournament, a raffle, 50/50s, and more. Amy shared her gratitude for those who came out in alater news report, which she shared on her personal Facebook page.
“I’m emotional,” she said. “I’m probably gonna go home and cry. But I’m very emotional just to see the support for not only her, but for the small community around the world of CAMK2B children.”
“By coming to this event and helping us raise money you are helping directly impact her life,” she wrote in anearlier Facebook post. “We are in need of money for the foundation a group of parents started to keep the research and answers coming along! The research will DIRECTLY be helping Lici because any answers found are going to help us understand Lici more and what she needs as she grows older.”
source: people.com
