MYRTLE BEACH, S.C. (WBTW) — A Myrtle Beach family is asking for help to get their two kids with a rare disorder to a specialist in Wisconsin.
Bardet-Biedl Syndrome (BBS) is an incurable illness that affects motor skills and organ failure. News13 spoke with Faith Ruiz’s family back in March, but now they think their son Erali is going through the same thing.
“It’s been a rollercoaster,” said Vanessa Ruiz, the mother of Faith and Erali. “I’ve been in and out of the doctors with Faith. Her blood pressure shot sky high, her weight has topped up to the maximum and to go to a heart doctor to have an echo and a sonogram done to see what’s causing her heart rate and blood pressure being high.”
BBS is a genetic mutation in the genes that causes obesity, blindness, kidney and liver failure, increased blood pressure and has an impact on speech and learning. It’s so rare that only about 3,000 Americans have it. And now, Vanessa Ruiz said doctors are 95% certain her son has it too.
“It’s really hard because you feel like — are you doing enough for your children, what else can you do?” she said. “A part of me just wants to pack everything up and sell everything I have and move to Wisconsin.”
That’s where the specialist is who Vanessa is trying to get both of her children to. She said there they can get more testing done to get answers and develop a treatment plan.
“It’s all on me to come up with the funds to get them help,” Vanessa Ruiz said.
The family has a GoFundMe set up to get them there, but with Faith’s health getting worse, Vanessa said they need to go now.
“If you have it in your heart, donate, but if not, just keep the family in your prayers,” Vanessa Ruiz said.