Hospital hosts surprise blood drive

A 14-year-old girl from Arizona with a rare blood condition whose family was selected for “Extreme Makeover: Home Edition” was surprised with a blood drive in her honor at Schneider Children’s Hospital on Saturday, January 31.
Lizzie Bell, a recipient of the Red Cross Hero Award, has Diamond Blackfan Anemia (DBA), a condition that affects only about seven in every million live births.
“The fundamental problem is the children don’t make red blood cells,” said Dr. Jeffrey M. Lipton, the Chief of Pediatric Hematology/Oncology and Stem Cell Transplantation at Schneider Children’s Hospital. “If you don’t make red blood cells you can’t deliver oxygen to tissue and it results in all the symptoms of severe anemia, fatigue and can lead to death.”
The treatment for DBA, which was discovered in 1938, includes blood transfusions and, sometimes, steroids. It is cured using bone marrow transplantation.
In 1993, Schneider Children’s Hospital started a registry for patients with DBA.
Bell, who has been a patient of the New Hyde Park children’s hospital, was in New York with her family on vacation as the team from “Extreme Makeover: Home Edition” rebuilt their house. The family said it was amazing, overwhelming and surreal to have been selected. Dad Mike said they had to keep pinching themselves to make sure it was real.
“I don’t even know if there’s words in the English language,” mom Kathy said. “We feel out of our skin right now.”
The episode of “Extreme Makeover: Home Edition” is expected to air March 22.
As the family was visiting other children with DBA at Schneider Children’s Hospital, they were surprised with the news that blood drives had been organized in 38 states, Washington, D.C., and Puerto Rico in honor of Lizzie Bell.
“It’s pretty cool,” Lizzie said. “It’s really just like, wow!”
Among those who came out to support the blood drive were other families whose children also have DBA. Long Island City resident Dora Brunette’s two-year-old son was diagnosed in September and now has to have blood transfusions every three weeks.
“This is great,” she said of the blood drive. “It really makes me feel that I’m not the only one and the fact that all these people are donating their blood to save these children is just a beautiful thing.”
Stacey Trebing’s 6-year-old daughter Katie was first diagnosed when she was three months old and received a bone marrow transplant from a younger sibling in 2005. Trebing, a Long Island resident, described the blood donors as heroes.
New Jersey resident Pam Braue was also at the drive with 10-year-old daughter Lexie, who was diagnosed with DBA when she was five weeks old and will have a bone marrow transplant at Schneider Children’s Hospital in March.
“Thank you for being so supportive and helping us get our blood and stay alive,” Lexie said as her message to the donors.
Anyone interesting in donating blood can call 1-800-933-BLOOD. To find out about the National Marrow Donor Program, call 1-800-MARROW-2.
Bell said that her message is “to donate blood because if you can take a pinch for a kid like me you just saved three lives when you donate one batch of blood because you donate red blood cells, white blood cells and the plasma platelets.”
More information on DBA is also available through the Diamond Blackfan Anemia Foundation, which was founded in 1994. For more information, visit www.dbafoundation.org or call Dawn Baumgardner at 716-674-2818.

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