By Jaime Lutz
Apr 1, 2014 11:27am
A Nebraska mother has turned to the Internet to raise money for surgery that she hopes will save her baby’s life after Medicaid denied coverage of the procedure.
Lawrence Bolden, who turns 1 year old in April, has DiGeorge Syndrome, an uncommon chromosomal disorder that causes birth defects, ABC affiliate KETV reported. In Lawrence the condition has resulted in a heart defect, problems with his lungs and a deficient immune system — resulting in a projected lifespan of only two years, according to KETV.
But a thymus transplant might give Lawrence a fighting chance. It’s a procedure that’s only ever been performed at Duke University, overseen by pediatric immunologist Dr. Louise Markert. The survival rate after the surgery is greater than 74 percent, Markert told ABC News. Sixty-eight of Markert’s patients have received the procedure and the oldest is now alive and well at 20, she said.
(Courtesy of KETV)
In the meantime, Lawrence’s mother Shalina Bolden has created a Gofundme.com account to raise money online for the procedure.
Duke University is trying to get the thymus transplant approved by the U.S. Food and Drug Administration, but currently it isn’t — something that keeps many state agencies, including Nebraska’s, from covering the procedure in its Medicaid program.
“We’re going as quickly as we can but we’re just a tiny group that has other responsibilities,” Markert said, in comparison to larger, private efforts that have more resources at their disposal.
Though other states usually don’t cover procedures that aren’t approved by the FDA, Markert has said many have made exceptions for this specific transplant. So far, though, Nevada hasn’t budged.
“All I suggest is that they talk to their colleagues in other states,” she said. “But I don’t want to be sarcastic about it either. I imagine they’re just trying to do their job. It must be very difficult when looking at the regulations in place.”
Shalina Bolden said her infant son has “fought hard for his life.”
“He’s been through two heart surgeries, he has a [tracheostomy], he’s had three feeding tube placements and every time he’s come out of it strong,” she told KETV. “I just want Lawrence to have a chance at life; to understand what it’s like to not be in a hospital bed.”
Bolden could not be reached by ABC News for further comment. A representative for the Nebraska Department of Health and Human Services did not return a call seeking comment.