DBA is bone marrow failure. Hallie’s bone marrow doesn’t produce red blood cells, which are essential for survival, as they carry oxygen throughout the body to the organs and brain.
Hallie is alive today because of doctors, medicine, and blood transfusions. And her courage and strength.
DBA is rare. Less than 800 children are diagnosed with DBA in the United States. Right now, the only “cure” for DBA is a bone marrow transplant, but Hallie does not yet have a match. Our two younger children are perfect matches for each other, but not to Hallie. She is currently taking steroids to survive, but once she becomes steroid resistant (which is what happens), she will need blood transfusions every 3 weeks to survive.
DBA is usually diagnosed at birth. When Hallie was first born we knew there was something wrong, but doctors just thought we were nervous first time parents. Our worries were pushed aside. But, she wasn’t gaining weight fast enough; a common cold seemed to linger for a month; she was colicky and cranky and couldn’t sleep. Little did we know this was because she wasn’t getting enough oxygen.
A red blood cell count for a healthy person falls between 11 and 15. When you start feeling sick, and are tired, it’s because your blood cell count has dropped a bit. When you hit a level 9 it’s “concerning”… a level 7, and you need a blood transfusion… anything less, and your organs can start shutting down.
At Hallie’s 12 month well-baby checkup they tested her for anemia and it came back positive. After a weeks’ worth of various blood tests we were told to head to the emergency room. A team of hematologists were waiting for us. When we arrived, Hallie’s red blood cell count was a 4. Most children (even most adults) would be completely lethargic at this point. But, Hallie is a fighter. She was up and running around. The doctors had never seen anything like that.
After a few weeks at a children’s hospital in Virginia where we lived, the doctors finally told us that she might have DBA.
There are only 4 hospitals in the entire U.S. who have specialists trained to treat children with DBA – Boston, Dallas, California and New York. We were flying to Boston regularly and working with our Virginia-based Hematologists trying to get the best treatment for Hallie Bea. We soon realized the ONLY option we had was to move to a state that had specialists for Hallie. So we left our family, our friends, our church, and our house and moved to Texas 5 years ago. I was 7 months pregnant with our son. Hallie Bea was not quite 2 years old.
Moving to Texas was the best thing we could do for our daughter. It has been lonely and trying at times, not having family around. But we have made new friends, and some of those friends have become like family. Hallie’s health has improved 100%. But she is on steroids, and potentially borrowed time.
Hallie is now healthy enough to attend school. She is a Girl Scout, and she is very active. But at any time our lives can (and will) change. Once she is dependent solely on blood transfusions we will even more desperately need a bone marrow transplant. But again, we still don’t have a match. In February of 2015 four (4!!) DBA patients passed away. This left us frantic. We need to act now.
We need to find a real cure. With so few effected, any research for a cure is 100% privately funded, and therefore, often nonexistent. The only cure for DBA is a bone marrow transplant. Not having a match or any scientific research for another cure is a tremendous weight to carry. This, coupled with the fact that less than 2% of Americans are even on the bone marrow registry, and those who are have a 1% chance of being a match to anyone worldwide, it is truly like winning the lottery when your match is found.
Hallie’s Heroes was born in July of 2015. Using Hallie’s strength and courage as our example, we decided to not just try to save our girl, but also the 14,000 other people who are desperately waiting to find their matches as well. Hallie’s Heroes’ mission is to raise money to fund research to find a cure for DBA, to educate and advocate, and to host bone marrow drives in order to find matches for all patients.
That brings us to today.
Please help us give all of these people a fighting chance to find their match. And, help us find a cure for DBA.
Elyse Barnard – Hallie’s Mom