Five year old Evie was diagnosed with Diamond Blackfan Anaemia (DBA) at six 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 UK, it requires intensive treatment and has no known cure.

Evie is treated with blood transfusions every four 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 ecf-logoiron 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 months. This process can be risky and finding matched bone marrow donors can be very challenging. No donor has yet been found for Evie.

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.

Evie’s family need to raise money to fund her bone marrow transplant expenses, costs like travel, accommodation and child care. We have set ourselves a goal of travelling from Alnwick to Assos in Greece, sailing Yves Christian from Plymouth to raise money to add to Evie’s fund. Please give generously for this very good cause.

Thank you.

Lotty and Sacha