Upon meeting the Murrys, you would have no idea how serious the situation they are facing is. That’s because they would rather talk about K-State football and basketball, the recent antics of the youngest one – Timmy, or how Maggie survives being the only woman in the household! But the truth is what’s always on their mind is Diamond-Blackfan Anemia. A disease that less than 500 people in the entire United States have … four of whom are the Murry’s sons.
Both Sean, now 21 and a sophomore at Lindenwood University, and Partick 17 and a junior at CBC high school, were diagnosed with Diamond-Blackfan Anemia at birth and have received monthly blood transfusions their entire lives. Along with the blood transfusions, there are daily medications, frequent trips to specialists and even a nightly procedure where a needle is inserted into their legs for hours to remove the iron that builds up in their blood. It’s this iron that makes Diamon-Blackfan Anemia fatal. The excess iron builds up in the heart, liver and other vital organs causing them to stop functioning altogether.
The younger Murry boys, Danny a fourth grader and Timmy who’s in second grade, have had more success with medications to stimulate their bodies to produce blood, but doctors warn the Murrys that these medications won’t work forever. The younger two sons will need monthly blood transfusions along with all of the other more rigorous treatments their older brothers endure in the near future.
While the future for the boys is unclear, one thing is certain. The only real hope for the Murry boys to enjoy healthy, long lives is a bone marrow transplant. And making matters more urgent is the fact that the younger the bone marrow recipient is, the greater the chances for success. So with each year that passes looking for a bone marrow donor, the likelihood of success with that transplant decreases.
When Tim and Maggie Murry began looking for bone marrow donors for Sean and Patrick over 15 years ago, they thought their search would be relatively easy. Unfortunately no one in their families matched the boys. But even after getting that devasting news, there was strong hope because white people with Irish ancestry are common and well represented on the National Bone Marrow Registry. But even given these better odds than many other people, there has still been no donor.
Currently there are 9 million people on the National Bone Marrow Registry in the USA. With over 310 million people in the US, we should be able to add many more people to the National Registry. We’re wanting to educate people about the need to get on the list and spread the word about the two donor methods.
All it takes is a quick, painless swab of your cheeks to get on the National Bone Marrow Registry. By doing so, you’re giving hope to Sean, Patrick, Danny, Timmy and the 10,000 other people in the US in need of a bone marrow transplant.
Get swabbed at a donor drive event or if you can’t make a donor drive, you can have an at-home swabbing kit mailed to you. Check out www.getswabbed.org for details on the at-home option.