We just got a call on Thursday evening that Nora has a match!!! Then we found out she doesn’t have just one match… she has 32 potential perfect HLA matches (10 out of 10) and 10 of them are women, and under 40 (which is even better!!!!)
We are positively giddy! Thank you God!
Now we just have to get her to see Dr. Farid Boulad a pediatric transplanter at Sloan Kettering. We have been having issues with insurance, Sloan is not “in-network”. We wanted to see other Doctors at Columbia; insurance wouldn’t cover it. We wanted to see Dr. Bousell at Cornell; insurance wouldn’t pay for it. We decided to save our “out of network” fight for Dr. Boulad since he has AMAZING survival numbers and has actually treated and cured children with VSAA and his focus is on non-cancer bone marrow disorders.
Dr. Boulad has been following Nora since the beginning. He actually called to get our permission to look at her labs when she was first diagnosed (in his free time) and he has been part of her “online team.” He is what they (other doctors) call an “aplastic nerd” he is fascinated by the disease and wants to find its cause and cure it—along with Fanconi Anemia which is a very similar genetic disease. He has written letters to the insurance company and has been in complete contact with Nora’s hematologist at Stony Brook all along.
WE HAVE TO GET HER TO SEE HIM!!!!
We have made an appeal to Fidelis Care to cover Nora going to Sloan. Dr. Boulad has made an appeal. Her Primary Care Physician has made an appeal. I need to get her Hematologist (who unfortunately is on vacation until March) to make an appeal.
Nora is on the NY State Child Health Plus insurance, which has been great as far as coving Stony Brook and her medications. We really cannot say enough good things about Fidelis and CHP. They have been amazing. Our next step is to appeal to our politicians on Nora’s behalf to get her to Sloan so we can sing more praises!
We would love if you are a registered voter in the State of New York to call your local representatives; Governor Cuomo, State Assembly, State Senate; US Congressperson, US Senators Gillabrand and Shumer; County Legislators and Executive. Call local level too, Town and Village and have them use their influence on Nora’s behalf to get her insurance — Fidelis Care (part of Child Health Plus) — to cover Nora’s transplant “Out of Network” so she can go to Sloan and be treated by the “Aplastic Nerd” of the East Coast! Think about it… if Fidelis is required to cover every child who has Very Severe Aplastic Anemia in New York State… they would only have to cover Nora. Her disease is an exception to the rule, and so should her treatment.
THANK YOU! THANK YOU! THANK YOU! FOR ALL YOUR PRAYERS!!!!
KEEP ‘EM COMING!!!! THEY ARE WORKING!!!!!!
We are so grateful for all of you especially those who have swabbed, ran drives, ran fundraisers, gave blood, donated money, and ESPECIALLY your prayers, well wishes and kindness. These past 9 months have been grueling. We couldn’t have made it without all of you. We are in for another year and a half and need more love and prayers for healing and strength!!!! Please keep the faith with us. We need all of you.
Love, The Getchells
Maureen, Shawn, Arik and Nora.
P.S. Please tell more people to swab. Nora’s friends James, Kyle and Kaitlyn all need to find their match too.