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Has anyone donated bone marrow? Ill 6 year old Mastic girl
I read this story on Newsday (posted below) and it broke my heart.
I figured I'd post it in case it inspires anyone else, but I'd love to know the donating bone marrow experience (should you be a match). If you could share some insight, that would be great!
I'd love to go to the benefit to see if I am a match.
Nora Getchell was at the hospital last month when she should have been at her kindergarten graduation.
Her illness prevented her from going to the Riverhead Charter School ceremony, but she dressed in her cap and gown and received her diploma from a doctor, her mother said.
Three months ago, Nora, of Mastic Beach, was like many 6-year-olds: smart, outgoing, "the kind of girl who would play baseball with a tiara on," said her mother, Maureen Getchell, 38.
Getchell said she thought Nora's recurring fevers over the past year were unfortunate, but nothing serious. Then Nora started getting bruises. Purple dots appeared on her legs.
She was sent to Stony Brook University Medical Center and on May 31 got a diagnosis: severe aplastic anemia, a bone-marrow disease that renders her body unable to make enough blood or fight off infection.
About 300 to 450 children nationally are diagnosed with aplastic anemia each year, even fewer with the severe form Nora has, said John Huber of the Aplastic Anemia & MDS International Foundation.
Nora must spend two days each week in the hospital getting transfusions of blood and platelets, said Dr. Yasar Celiker, a Stony Brook hematologist who treated Nora.
Nora spends most of her days at home, avoiding anything that might expose her to germs, including raw food, school and other people, Maureen Getchell said.
"She can't get a mosquito bite," Getchell said. "If the slightest germ gets in there, we're in the hospital."
Nora can't ride her bike or play with her dog. She has remained upbeat, Getchell said, except for when she couldn't go with her father and brother to a Long Island Ducks baseball game.
"It just got to the point where she was, like, 'I can't do anything,' " Getchell said. "There was nothing you could say."
Nora has cried over the unibrow and goatee that sprouted as a result of her immunosuppressant drugs, her mother said.
Nora said she is scared when she gets her shots at night. But the worst part about being sick, she said: "I don't see my friends."
A stem-cell transplant is the only way for Nora to be cured, Celiker said, but her best hope for a match -- her brother, Arik, 7 -- wasn't one.
Now the family is hoping steroids and immunosuppressant drugs will send Nora into remission, Maureen Getchell said. If not, Nora will need to find that match.
The family is waiting it out with prayers, high hopes and "lots of Clorox," Getchell said.
The Mastic Beach Property Owners Association, where Getchell is on the board of directors, is holding a blood and donor registration drive to benefit Nora on Tuesday from 2:30 to 8:30 p.m. at its clubhouse, 31 Neighborhood Rd.
Nurses will collect DNA samples from volunteers willing to enter the National Bone Marrow Registry, to see whether they are matches for Nora or anyone in need of a transplant.
The drive is one more event Nora can't attend, her mother said -- she'll be there via Skype.
Message edited 7/24/2011 9:53:55 PM.
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