One single bone marrow donor could save four St. Louis brothers' lives.
All four of the Murry's sons, Sean (21), Patrick (17), Danny (10) and Timmy (8) were diagnosed at birth with a fatal blood disease called Diamond Blackfan Anemia. All of the boys will need bone marrow transplants as the only hope for living long, healthy lives.
The Murrys are telling their story with the hope of finding donor matches for their sons, and to increase the potential donors with the National Registry.
In the United States, there are approximately 10,000 people in need of a bone marrow transplant searching the National Bone Marrow Registry for a donor. Only 4 out of 10 patients are lucky enough to receive bone marrow transplants. And sadly, each year as many as 3,000 people in this country die waiting for a bone marrow donor match. Currently, less than 2% of the US population is on the National Bone Marrow Registry.
Everyone ages 18 -55 is encouraged to come get swabbed. All it takes is a cotton swab of the inside of your cheek. It doesn't hurt and it takes mere seconds. And, it's free.
A "Marrow for Murrys" donor drive is happening Saturday, April 28 from 10 a.m. to 4 p.m. at Ladue Horton Watkins High School.
For more information about the Murry's story, visit www.marrowformurrys.com. Visit www.getswabbed.org to learn more about DKMS or registering as a bone marrow donor.
DKMS has helped us with some frequently asked questions:
Can I get tested for a specific patient or family member?
When you sign up as a bone marrow donor with DKMS, you make a commitment to consider donating to any searching patient who matches you. If you want to be tested only for a specific patient, you will need to have your testing done privately. You can request a private test kit at bonemarrowtest.com.
If I have already been tested for a family member, can I send my results to DKMS?
Yes, contact DKMS for a registration form which you will send back with a copy of your HLA tissue typing lab report. Once you are listed with DKMS, we will contact you if you are identified as a possible match for a patient.
What is a bone marrow transplant?
A bone marrow transplant is a lifesaving treatment for people with leukemia, lymphoma and many other blood diseases. First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then, a donor's healthy blood-forming cells are given directly into the patient's bloodstream, where they can begin to function and multiply. For a patient's body to accept these healthy cells, the patient needs a donor who is a close match.
Does it hurt?
For the peripheral blood stem cell donation, most people will feel bone pain from the injections they take for 4 days before the donation. Many people will also have muscle aches or headaches at some point while taking the injections. It might feel like you are starting to catch the flu. After you donate, you will probably also feel very tired. These symptoms should go away within one to two days. During the bone marrow extraction you are under anesthesia. After the procedure, donors generally feel discomfort and some pain in their lower back for one or two weeks. We check on our donors after the donation to make sure they are recovering properly. If you're not, we'll arrange and pay for any follow up care.
Who pays for the donation process?
The costs for the donation procedure - whether they are medical, travel or miscellaneous expenses - are covered by the patient's medical insurance, DKMS and the Be The Match Registry® (operated by the NMDP). How are patients matched with donors? A cheek cell sample is collected at registration. The sample is tested for the HLA tissue type and added to the Be The Match Registry® (operated by the NMDP) so doctors can search and find a matching donor for their patient.
What happens if I match a patient?
If you are found to be a match for a patient, more testing will need to be done to determine if you are the best suitable match, including collecting blood samples and a physical exam. A DKMS representative will walk you through each step of the process and will be available to answer any questions you may have.
What is human leukocyte antigen (HLA) typing?
Human leukocyte antigen (HLA) typing is a DNA based tissue test used to match patients and donors for bone marrow transplants. HLA are proteins - or markers - found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close match between your HLA markers and your donor's can reduce the risk that your immune cells will reject your donor's cells or that your donor's immune cells will reject your body after the transplant.
How likely is it that I will match a patient?
We cannot predict this likelihood as there is too much diversity in tissue types. There is a chance you may never be identified as a match for someone needing a transplant - or you may be the one match to save someone's life. Does ethnicity affect matching? Your ethnic heritage is an important factor as patients are more likely to match with someone of a similar background. Increasing the diversity of the donor pool increases the likelihood that all patients will find a lifesaving match.