Norah Needs You

Be the Bone Marrow Donor

For this young Dancer / Joke-Teller / Bookworm

Living with Fanconi Anemia 

 

Meet Norah

Norah is an expert joke-teller, modern-dancer, ice cream-licker, and loving big sister.  At five years old, she takes her jobs pretty seriously. And she's not messing around when it comes to chocolate chip cookies.  When Norah's not in Pre-K, you can find her playing in her favorite park or lounging at home with her nose in a book (or ten). 

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Full of song and dance

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Always eager to be twinsies with her little brother

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Reaching for the sky

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Queen Elsa and her firefighting sidekick

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Will you be my Valentine?

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Taking charge at her first bone marrow biopsy

What's FA?

Norah was diagnosed with a rare genetic disorder called Fanconi Anemia (FA). Essentially, FA interferes with her body's ability to properly repair its DNA.  If untreated, it increases her risk of leukemia or bone marrow failure to 90%.

 

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Currently, the only treatment to prevent leukemia is a bone marrow transplant.  Norah is healthy right now, but her doctors predict that she will need a bone marrow transplant in the next few years which will require a donor with an exact match to make sure the procedure is successful.

 

Finding the right bone marrow match is not easy. While siblings typically make the best donors, Norah's little brother is unfortunately not a match. We need to expand the national bone marrow registry of potential donors to find a match for Norah. Norah's family is working with both Be the Match and Gift of Life to add people to the national bone marrow registry with a simple, painless cheek swab.

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This is where you come in.

 

Save a Life

Norah has a donor match out there - IT COULD BE YOU. 

Join the registry with a simple painless cheek swab to help save Norah's life.

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Adding donors to the registry increases the likelihood of finding a life-saving match for Norah and others in need. 

 

SWAB FOR NORAH

Register to get your cheek swab in the mail! 

SHARE

 

Encourage 10 people to swab or share with your network!

HOST A DRIVE

Organize a bone marrow donor drive to get people in your community registered!

DONATE

Donate to the Fanconi Anemia Research Fund to help find a cure!

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FAQ

Get answers to frequently asked questions about bone marrow donation and the commitment involved: 

Am I eligible to join the registry?

You can join the Be The Match bone marrow registry if you: - Are between the ages of 18-60 - Live in the United States - Meet health guidelines - Are willing to donate to a patient in need If you are between the ages of 18-44, you are especially needed because research shows that donations from younger donors lead to more successful transplants. For this reason. doctors request donors in the 18-44 age group 85% of the time. The easiest way to find out if you meet health guidelines is to start the registration process. (A list can also be found here.)



How easy is it to join the registry?

Joining the Be The Match registry is as simple as completing a 6 minute survey, opening your snail mail letter 3-7 business days later, and swabbing the inside of your cheeks using a cotton swab – swabbing is quick, easy and painless. Return the swab kit in an envelope and, Abra K Dabra, you're on the registry. You only donate bone marrow if someone is a genetic match and presently in need of a transplant. You may be their only hope for a cure.



I want to help but I'm scared of donating bone marrow. Is it risky?

Donating bone marrow is an extremely low-risk procedure. In the event that your marrow could save a life, you would first have a physical examination and a blood draw to ensure that you're the perfect match and that you are healthy enough to donate.

Though no medical procedure is without risk, there are rarely any long-term side effects. Norah herself has to get bone marrow biopsies annually to find out her risk of bone marrow failure/leukemia, a procedure that is at least as challenging as donating marrow. Discharged by lunch time after her first bone marrow biopsy, she took a two hour nap and while bruised, was dancing in the rain that evening.

There are two different methods of donating bone marrow depending upon the needs of the recipient. The majority (80%) of donors donate through a non-surgical procedure similar to a blood draw, which involves injections of a drug to increase the number of cells in your bloodstream for the 5 days leading up to the donation. The other 20% donate with a needle through a hole already in the hip while under general anesthesia, so you will feel no pain during the donation. More information can be found here.



Does the ethnicity of Norah's donor matter?

We know that the likelihood of finding a bone marrow match increases substantially along ancestry lines. For Norah, this means that we are looking more heavily for a donor with Jewish Ashkenazi ancestry, though her match may or may not end up being Jewish. We also know that many other groups are severely under-represented in the bone marrow registry, resulting in low odds of finding a donor. We are in this to help Norah and all children who need a life-saving match.



I'm not an Ashkenazi Jew, can I still help?

Yes! We don't know whether you will be Norah's match until you join the registry. Also, if you aren't a match for Norah, you might be able to save someone else's life. (Likewise, maybe Norah's match will have joined the registry through a different campaign, in honor of someone else’s loved one. Generosity begets generosity.)



Does it cost anything to join the registry?

No, if you are between the ages of 18-44 years old, you can register and donate for free.

If you are 45-60 years old, Be the Match charges you $100 to register and donate to cover their costs for you to join.*

If you are 61 years old or older, you are not able to join the registry.

*Why pay if you're 45 to 60 years old? The best, long term outcomes for bone marrow patients is with bone marrow donors who are under 45 years old. Therefore, Be the Match covers the cost to process that age group. However, sometimes recipients do not have any other options. Donations from this age group might be a patient's only chance for survival.



If I'm chosen to donate marrow, what is the recovery time?

Marrow donors should expect to return to work, school and most other activities within 1 to 7 days. Your marrow will return to normal levels within a few weeks.



Do I have to have health insurance or pay to donate if I'm chosen?

Donors between 18-44 years of age never pay for donating and are never paid to donate. All medical costs for the donation procedure are covered by the National Marrow Donor Program, which operates the Be The Match Registry, or by the patient's medical insurance, as are travel expenses and other non-medical costs. If necessary, paid time off from work (including recovery time) is also covered by Be The Match, if not covered by your employer.



I think I'm already on the registry, do you need me to sign up again?

First, please confirm. Second, if you are on the registry, make sure that they have your most up to date contact information! If they cannot reach you and you are a match, all you are giving is false hope. They must be able to reach you.

You can check if you are registered with Be The Match by calling 1 (800) MARROW-2.

You can check if you are registered with Gift of Life at https://www.giftoflife.org/page/content/am-i-registered



I'm unable to join the registry for age or medical reasons. Should I feel badly?

NO! We are Norah's parents and we are not matches for her. We think finding Norah's winning match is like finding a winning lottery ticket. It is highly unlikely that any one lottery ticket would win. However, the more lottery tickets that exist the more likely SOMEONE will win (in this case, the prize is the opportunity to save our daughter's life--the greatest lottery prize of all). Therefore, it's a numbers game. Even more important than you, yourself, joining the registry is you recruiting 10 people to do so (who then also recruit 10 people each as well...). Please help us expand the registry by encouraging others in your network to register and by hosting drives.



If I donate, will my body lose bone marrow?

No. Donating bone marrow is not like donating an organ that you don't get back. Your cells replenish themselves in 4 to 6 weeks. Because only 1 to 5% or less of your marrow is needed to save a patient’s life, your immune system stays strong.



 

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