LI Advance

Nora’s got her match
Story By: LINDA LEUZZI, Editor
 
  01 March 2012
 
Nora Getchell, the 6-year-old girl with severe aplastic anemia, will have a lot to celebrate on her seventh birthday, March 14.
Besides 32 bone marrow matches, including 10 from females, Getchell will be able to get her bone marrow transplant covered at Memorial Sloan Kettering Hospital, thanks to Legis. Kate Browning’s push to Gov. Andrew Cuomo’s office.
“The doctor she needs to go to is at Memorial Sloan Kettering,” Browning said. “Basically, the insurance coverage she had wouldn’t cover the transplant there. It’s my understanding that Nora is the only child in New York with this aplastic anemia. When we found out the insurance would not cover her, we immediately contacted Gov. Cuomo’s office to see what kind of assistance they could help us with. Within 24 hours we got a response back that the problem was solved.”
Browning called on Feb. 15. On Feb. 16, the governor’s office called. Nora was going to Sloan Kettering.
Scott Martella, the Suffolk County regional representative to Gov. Andrew Cuomo, confirmed their office’s involvement in the home run for Nora. “Kate contacted me and in detail described the situation and time sensitivity, and I, as the governor’s representative, contacted the Department of Health division of managed care and we were able to work in concert with Fidelis, their provider,” Martella said. “There were only a couple of doctors in her insurance network and there was only one doctor who specialized in this area who fell out of the network. But we were able to work to get her coverage for that specific doctor. When you break it all down, it comes down to a family struggling with a life-threatening disease, desperate for help.”
Browning said the news was probably the best thing to happen in her six years in office.
Local blood drives and bone marrow compatibility checks and fundraisers headed by Browning and the Mastic Beach Property Owners Association and others began after Nora’s diagnosis last June 13.
“We did huge drives and pushes,” said Maureen Getchell, Nora’s mother. “My husband’s family is in Maine; we did almost 20 there and in California, Oregon, Washington, D.C., a bunch in the city, a couple in Massachusetts, New Jersey and a bunch on Long Island.”
Maureen Getchell said that Nora will most likely start her bone marrow transplant procedure the day after Easter. “So she can have her Easter dress,” she said.
The procedure, which is arduous, will be performed by Dr. Farid Boulad, a pediatric hematologic oncologist, who is medical director of the Pediatric Day Hospital.
“It involves five different chemos, and ADT, an anti-globulin,” Getchell said. “She has to have total body radiation, then after there are no cells in the bone marrow, they do a biopsy, then give her the transplant, a transfusion. She’ll have a catheter put into her chest. She’ll be in the hospital in complete isolation for a month. My husband and I will be able to visit, but we’ll wear masks, booties and gowns.”
What happened when they got the call from Browning?
“We jumped all around and had pasta,” she answered of the celebration, which included their dog Nuggett. “My son Arick went crazy, then we went to St. Jude’s to say thank you to God.”
“She’s really upbeat,” Getchell added of Nora.
Stony Brook University Hospital Medical Center will send their Child Life staffer to decorate Nora’s room at Sloan Kettering, where she’ll stay for a month, Getchell said.
Even with the bone marrow transplant covered, there are still expenses. “We still have to pay for the mouth swabs [on prospective bone marrow donors] — they’re $100 apiece — and we did about 3,000 so we have to make up that money, plus gas for the trips,” Getchell said. “The Francis Pope Foundation will pay for her stay at Ronald McDonald after. Capital One gave us $5,000 for swabs; the Brookville Country Club raised money at their Christmas luncheon, $10,000.”
Getchell expressed her thanks and relief to Browning. “This whole community has been tremendous,” she said. “Kate, the Mastic Beach Property Owners Association, the fire department, Knights of Columbus, Applebee’s; it’s been an unbelievable outpouring. They all came to help. My neighbors made me lunches and dinners and I never had to worry about anything. I had people wanting to cut our lawn. It was so amazing. And Bob DeBona, I can’t say enough about him.”
Those who would like to contribute to expenses can send a check to Friends of Nora Getchell, P.O. Box 212, Mastic Beach NY 11951.
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One thought on “LI Advance

  1. Hello,
    My daughter was diagnosed with Severe Aplastic Anemia in Dec 2007. She was 5yrs old. She had a BMT in March 2008. She received her BMT at Schneider’s (now it is Cohan) here in NY. One of her brothers was her donor. She will be 10 in August and is actually healthier than my other children. I am so glad you found a donor. I can not wait to tell my daughter about you ( she is in bed right now. I just read the article about you in Newsday March 5th edition. You are the very first local person I have heard about with this rare illness. All the best to you! By the way our insurance company tried to deny my daughters treatments too. Thank goodness I fought them and won!

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