The brightest lights shine in the deepest dark.
We’re donating to the DBA Foundation. Help us!
What is DBA?
Diamond Blackfan Anemia (DBA) is a rare blood disorder of bone marrow failure. It is typically diagnosed in infancy. In DBA, red blood cells die before they can mature and carry oxygen to all the cells and tissues in the body. A child with DBA does not make enough red blood cells to survive. Without medical intervention, they would die in a matter of weeks.
How rare is DBA?
Some researchers estimate less than 1,000 people in the world have DBA. The majority of these people are children and teenagers. Since DBA is so rare, it is a poorly understood and highly mysterious condition.
What is the treatment for DBA?
The primary treatment for DBA is red blood cell transfusion. Your Red Cross blood donation can literally give a child with DBA another month of life! Transfused blood cells have an average lifespan of approximately one month; a child with DBA must receive a new blood transfusion every 3-5 weeks. Some children with DBA respond to corticosteroid therapy and bone marrow transplants. However, all treatments, including repeat blood transfusions, come with dangerous complications and life-threatening side effects. Treatment remains, of course, absolutely necessary.
Is there a cure for DBA?
There is no cure for DBA. Because DBA is so rare, there is little financial incentive for medical research companies to try to find a cure.
Does DBA ever just go away?
Yes. But it is unlikely. Approximately 20% of children with DBA go into what is called “spontaneous remission” at some point in their lives. This means they begin making enough of their own red blood cells to stop needing transfusions and/or corticosteroids. Remission may last indefinitely or a few years. The other 80% of children with DBA do not experience spontaneous remission and rely upon medical intervention to stay alive. Some children with DBA are now thirty or forty years old and have healthy children of their own.
What causes DBA?
DBA is considered a genetic disorder. However, there’s more to it than just genes. Some children go into remission after puberty. Others experience remission after being treated with intensive anti-virals due to an unrelated infection, or after undertaking dietary therapy and nutritional supplementation. No one really knows why kids with DBA aren’t making enough red blood cells, nor why they sometimes start making more of them.
Does DBA ever affect the other cell lines in the bone marrow, like white blood cells and platelets?
Yes. Some children with DBA have very low or moderately-low white blood cell counts. White blood cells fight infection, and becoming immune-compromised is a serious concern. When white cells and platelets start to drop, parents start to get very nervous. DBA is known to transition into leukemia.
What is the DBA Foundation?
The Diamond Blackfan Anemia (DBA) Foundation provides vital knowledge and emotional support to new parents of infants suspected of having DBA, as well as community to those who have lived with DBA for decades. Due to the rarity of the disorder, the DBA Foundation is the primary source of research funding for a DBA. Every penny counts!
Many small lights make a big difference in the dark!
We hope our pre-order campaign is wildly successful, and we are doing everything in our power to make it so. If we surpass our funding goal, we will donate 50% of profits to the DBA Foundation. The remainder will be re-invested into the promotion and future sales of the book.
Please support our campaign, help us co-produce a wonderful, warmer version of Rockabye Baby, and donate to the DBA Foundation.
Learn more about the DBAF and DBA.
* Note: The creator of Rockabye Baby wishes to increase DBA awareness in honor of her brave little daughter, who is six years old and has had nearly 100 blood transfusions to date.