Jim and I founded Friends of DBA in 2007 to raise money and awareness for a disease that we were powerless to defeat: Diamond Blackfan Anemia (DBA), a rare disease affecting infants and children. Our son, Trevor was diagnosed with DBA at 18 months old. DBA patients are unable to produce red blood cells and require steroid treatments and/or blood transfusions. There is currently no cure.
Our Family Story:
Our story starts with a trip to the doctor when Trevor was 18 months old. Results showed a red blood cell count of 1.9 (normal is 12-15) Trevor was admitted to Rainbow Babies & Children’s Hospital for a transfusion. We were told that our son had 6 months to live. Several phone calls to doctors all over the country resulted in a trip to Toronto Sick Kids to see a Diamond Blackfan Anemia (DBA) specialist. Here Trevor underwent his third bone marrow biopsy along with additional blood tests. Results indicated a possible diagnosis of DBA. Steroid treatments were our first option. Trevor was put on large doses of the steroid Prelone with positive results. After two weeks his blood counts went up and we were seeing improvements in his energy levels.
Trevor’s official diagnosis of DBA was in 1999 at the National Institute of Health (NIH) in Bethesda, MD. By then the steroid treatments had been working and we along with the NIH doctors felt no need to stop. We slowly started reducing his dosages. It worked! The less we gave him the better he felt and his blood count and body were able to adjust. Our every two-week appointments moved to every month, then 2 months, then 4 months, and now Trevor sees his doctor every 6 months. His steroid treatments have been reduced to two times per week. To date, Trevor has a red blood cell level that stays in the 10-11 count range. He takes Prelone twice a week and continues to see his doctor every 6 months. He is a graduate of the University of Cincinnati with a degree in Fine Arts. He is currently employed at Superior Beverage in Solon, OH as a graphic artist. He owns his own home, enjoys spending time with family and friends, and continues to develop his skills as an artist.
Back in 2011, we have the privilege of having Trevor interviewed for the "Strongsville Patch". Trevor wanted to share a little bit of his story. Click the link to read more on this interview with Trevor.
Friends of DBA Mission Statement:
Our goal is to generate funds for research to find a cure for Diamond Blackfan Anemia (DBA). Our additional purpose is to provide DBA Families with education when necessary and to assist DBA Families in crisis.
“Causes do matter. And the world is changed by people who care deeply about causes – about things that matter. We don’t have to be particularly smart or talented. We don’t need a lot of money or education. All we really need is to be passionate about something important; something bigger than ourselves. And it’s that commitment to a worthwhile cause that changes the world.”