5 year old Evie was diagnosed with Diamond Blackfan Anaemia (DBA) at 6 weeks old. DBA is a blood condition where the bone marrow fails to produce red blood cells. DBA is a very rare condition effecting only 130 people in the U.K it requires intensive treatment and has no known cure.

Evie is treated with blood transfusions every 4 weeks to bring her red blood cell count up to an acceptable level. The body normally recycles iron from old red blood cells when producing new ones but this does not happen in DBA patients. Frequent transfusions cause the accumulation of iron in the body. Iron overload can cause damage to the major organs if not properly managed and so patients must take a “chelation” drug to remove excess iron from their bodies. In Evie's case she takes an oral drug (Exjade) daily to help reduce her iron overload.

Evie's bone marrow is failing, she will require a bone marrow transplant in the next 18-24 monthss. This process can be risky and finding matched bone marrow donors can be very challenging, we have not found a donor for Evie yet.

A bone marrow transplant would mean Evie's bone marrow is replaced with healthy, donated bone marrow and she would no longer be reliant on blood transfusions. This life changing transplant will give Evie the chance to lead a normal life.