Myrtle Beach 8-year-old diagnosed with rare disorder, family looking for help and answers

Local News

MYRTLE BEACH, S.C. (WBTW) — About 3,000 people in the United States are diagnosed with Bardet Biedl Syndrome and 8-year-old Faith Ruiz is one of them.

“It’s a rare genetic disorder that touches every organ of her body and she could lose her eyesight before the age of 15,” Vanessa Ruiz, Faith’s mother said. The family lives in Myrtle Beach.

The disorder can cause weight gain, numbness in the legs and feet, learning disabilities, and reduced kidney function.

“She’s constantly asking am I going to be able to see when I’m older, she’s going to have a lot of surgeries,” Vanessa Ruiz said.

Faith was diagnosed 2 years ago and ever since then, her family is trying to raise money to get Faith to a specialist in Marshfield Wisconson. The only specialist in the country is located in Wisconsin.

Vanessa said she had lots of questions when they first found out saying she was, “heartbroken, where does it come from, how does it happen, just a lot of questions on my mind. Is it curable?”

BBS is an incurable syndrome but there are treatments available. Vanessa said they’ll find out more when they see the specialist.

“The doctor gave me a rough estimate of 20,000 dollars of just a days worth of testing which she has to have 2 days worth of testing,” Vanessa Ruiz said.

Vanessa said she’s thankful for all those who have donated so far saying, “but hopefully I can get there, get answers and just see what they can offer there.”

They have raised $8,690 so far on the GoFundMe but have a goal of $30,000.

A link to Faith’s GoFundMe can be found here.

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