Lindsay Wilcox, NBCDFW.com
Doctors hope a bone marrow transplant will help 16-month-old Winslet Seoighe beat the mystery disease that now bears her name.
Doctors at Medical City Dallas say a bone marrow transplant may be the life-saving cure for a disease they've never seen.
Sixteen-month-old Winslet Seoighe was born six weeks premature with a host of health problems.
“Her vital organs were enlarged and shutting down,” said her mother, Tracey Seoighe.
Doctors told her that if she had not delivered Winslet that day, the baby would not have survived.
Winslet was sent home after seven weeks in the neonatal intensive care unit. But it was soon clear there was another problem; Winslet could not make her own blood.
She was referred to Texas Oncology at Medical City Dallas, where doctors discovered she had a disease they'd never seen before. They are now calling it Winslet’s disease.
Dr. Stan Goldman sent Winslet's blood work to physicians around the world, who were all baffled.
“We think it's probably a defect in the actual coding of the membrane of the red cell, because her bone marrow has plenty of nice, baby red blood cells in there. They just don't get out into the blood stream,” he said.
For Winslet, there were two treatment options: a life dependent on blood transfusions or a bone marrow transplant.
”We didn't have a guarantee that the transplant would cure her, because we don't know what it is,” Seoighe said.
A perfect match was found in umbilical cord blood donated to the Texas Cord Blood Bank.
Winslet is 26 days post-transplant and still has a long recovery. But her doctors say they are hopeful for her future.
Seoighe says her daughter is "amazing."
”She still doesn't feel well, and she still likes to cuddle with mommy and daddy," she said while holding Winslet.
Despite insurance coverage, Winslet’s medical bills are estimated at $500,000.
The family has joined forces with the Children’s Organ Transplant Association, a group that helps raise money on behalf of transplant recipients.