Florence, South Carolina 2021-07-29 21:42:10 –
Myrtle Beach, South Carolina (WBTW) — A family in Myrtle Beach is seeking help from a Wisconsin expert to bring two children with a rare disability.
Bulletin Board System (BBS) is an incurable disease that affects motor skills and organ failure. News13 I talked to Faith Lewis’s family I came back in March and now I think my son Elari is doing the same.
“It was a roller coaster,” said Vanessa Luis, the mother of faith and Elari. “I went in and out of the doctor with faith. Her blood pressure was high, her weight reached maximum, she went to a heart doctor for echo and ultrasonography, and her heart rate and blood pressure were high. I investigated the cause of the problem. “
BBS is a genetic mutation in a gene that causes obesity, blindness, kidney and liver failure, high blood pressure, and affects speech and learning. It’s so rare that only about 3,000 Americans have it. And now Vanessa Lewis said the doctor was 95% sure that her son also had it.
“It’s really hard because you’re feeling — are you doing enough for your child, what else can you do?” She said. “Some of me want to pack everything, sell everything I have, and move to Wisconsin.”
The specialist is where Vanessa is about to take both of her children. She said there she could do more tests to get answers and plan treatment.
“It’s up to me to come up with the money to help them,” Vanessa Lewis said.
Family GoFundMe Prepared to take them there, but as the health of the faith deteriorates, Vanessa said they need to go now.
“If you have it in your heart, donate it. If not, put your family in prayer,” Vanessa Lewis said.
Myrtle Beach family asks for help to get 2 kids with rare disorder to specialist in Wisconsin Source link Myrtle Beach family asks for help to get 2 kids with rare disorder to specialist in Wisconsin