With a giant smile, blond hair, and huge brown eyes, Nora Getchell looks like a typical six-year-old girl. But a rare blood disease means she cannot interact with other children and must wear a mask each time she leaves her home.
“She is like any little girl, she loves her Barbie dolls and playing with her bear,” her mom Maureen Corrigan Getchell, told the Irish Voice.
“When you look at her, you would never think she was sick,” the Mastic Beach, Long Island resident added.
Nora suffers from a rare blood disorder called severe aplastic anemia, a condition that occurs when your a stops producing enough new blood cells. The uncommon disorder can occur at any age and leaves one feeling fatigued and more susceptible to infection and uncontrolled bleeding. It affects three in every million people in the U.S. each year.
“Basically her body doesn’t allow her to make blood,” Corrigan Getchell told the Irish Voice.
“They don’t know how she got it. There are not a lot of children that have it.”
Nora’s condition means she must receive weekly blood transfusions. Her only hope for a cure is a bone marrow transplant.
“It’s like going to the gas station and filling up your tank,” her worried mom reflects. “The day after she gets super hyper.”
It all began last May. Corrigan Getchell and her husband Sean became concerned when their young daughter fell ill.
“It was Memorial Day weekend. She had a fever that just wouldn’t go away,” she recalls.
“She learned how to ride a bike and she had a really bad bruise as she hit herself with the pedal.
“When we brought her to the doctor they first thought it could be leukemia,” Corrigan Getchell recalls. But doctors soon discovered that the 6-year-old was suffering from the rare condition.
A drastic change in the life of a young child, Nora now must make weekly trips to the blood clinic where she receives whole blood platelets. She also is on several medications.
“The hardest part is she doesn’t get to see anybody and she can only play with her brother 7-year-old Arik,” Corrigan Getchell reflects.
The lightest touch can cause Nora to come out in bruises. “The bruises can get big and then they are really painful,” her mother said.
Nora is currently undergoing drug therapy but she is not responding to the treatment. The family is now doing a cross-country “swabapalooza” to get as many healthy 18-44 year-olds to get their cheeks swabbed and added to the National Bone Marrow Registry and hopefully find a match for Nora.
To find the nearest drive or to get a swab kit mailed to your home, go to www.bethematch.org/join and enter the promo code: NG2012. Donations can be made to the "Friends of Nora Getchell" Foundation P.O. Box 212, Mastic Beach New York, 11951.
Visit www.norasstars.wordpress.com to follow Nora’s progress.