Evie, who lives in Shilbottle, is 5 years old and was diagnosed with Diamond Blackfan Anaemia (DBA) at the age of 6 weeks.
DBA is a rare blood condition where the bone marrow fails to produce red blood cells. The condition is extremely rare, affecting approx. 125 people in the UK and less than 1000 worldwide. It requires intensive therapy and has no known cure.
Treatment consists of 2 options. Steroid therapy or blood transfusions. At 9 months old Evie responded well to the steroid therapy, but due to an infection in her bone marrow she lost her response and went back to having blood transfusions every 3-4 weeks. Evie has had 31 blood transfusions, a side effect of this treatment is iron overload. Blood is full of iron so every bag of blood Evie has means more iron building up on her liver, heart and pancreas. Evie started on treatment last year to help remove the excess iron from her body but due to complications this treatment had to be immediately stopped.
Evie’s blood transfusions are carried out at the RVI in Newcastle but her main care is carried out by St Marys Hospital in Paddington, London – which is the UK’s specialist centre for DBA. Evie and her family regularly travel to St Marys hospital where Evie undergoes bone marrow biopsies, liver biopsies, blood tests, MRI scans and many other procedures. Evie’s bone marrow is failing and the team at St Marys are searching the bone marrow register to find a suitable donor for Evie as a bone marrow transplant may be Evie’s only option.
Evie’s fund has been set up to help Evie and her parents with travel, accommodation and living costs whilst staying in London.
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