Bend Girl is First Patient Ever to Receive Bone Marrow Transplant as Potential Cure for Rare Blood

04/15/02    Portland, Ore.

Alicia Woolhiser, a 6-year-old girl from Bend, Ore., is steadily improving following a matched unrelated-donor bone marrow transplant (BMT) for her rare blood disease. Woolhiser is the first patient ever to receive an unrelated BMT in an attempt to cure her of Glanzmann's Thrombasthenia (GT), a disease which causes excessive bleeding. Woolhiser received her transplant on Feb. 6, 2002 at Doernbecher Children's Hospital.

"The marrow from the donor is working and making normal platelets," said Kamar Godder, M.D., associate professor of pediatrics, Oregon Health & Science University School of Medicine. "She's doing extremely well, better than expected, but only time will tell if she will continue to improve since her transplant was only a couple months ago," added Godder. Godder said Woolhiser had not developed any excessive bleeding during the procedure or serious infections after the procedure-- both are known complications of BMT. Woolhiser did, however, develop graft-versus-host disease, a condition in which the new marrow attacks the patient's body, but she was treated and is now doing well.

"She's doing really good. She's pretty much back to her old self," said Lisa Woolhiser, Alicia's mom.

Alicia was diagnosed with GT when she was only 3-months-old. The disease keeps platelets from joining and forming blood clots, which leads to excessive bleeding.

Alicia's parents are both recessive carriers of GT and are not affected by the disease. However, Alicia's 4-year-old sister, Julia, also has GT, while her 8-year-old sister, Vanesa, does not.

As Alicia grew, she had to be taken to hospitals for weeks at a time to stop her constant nose bleeds. When she was a baby, her ankles would bruise when her parents lifted her legs to change her diapers. Lisa said she and her husband have been mistakenly reported to the police on a few occasions because of Alicia's unexplained bruises.

Lisa said at first she was afraid after being reported, but now she doesn't react as much. "I just take it as it comes," she added.

Godder said that an unrelated bone marrow donor was Alicia's only option because none of her family members were matches and because her bleeding had become so difficult to control. After an extensive search, an adult donor was found through the National Marrow Donor Program.

Godder said that the road to recovery will be a long one for Alicia. "She will need medical treatment for about a year. She will need to be observed and followed for many years, even if the follow-up is only once a year," Godder explained.

Since 1996, 35 pediatric patients have been treated with matched, unrelated bone marrow transplants by the Doernbecher transplant team.