Emilia needs our help to fight Aplastic Anaemia

My youngest daughter Emilia is five-years-old. She loves music and dancing and she is learning to play the drums. Each week she and her big sister Ellie, aged 10, attend Amelia’s Dance Academy in Redditch.

Unfortunately in May she was diagnosed with Aplastic Anaemia which is a life threatening condition affecting her bone marrow. She cannot produce the right amount of red blood cells, platelets or white blood cells. This has resulted in rashes, bruising, tiredness and she is susceptible to infections.

Emilia’s illness and the short-term treatment she is receiving mean she misses out on many things a normal five-year-old would usually do. Emilia tires very quickly and bruises easily; she often also suffers from a serious rash. Every week she must undergo blood and platelet transfusions, which leave her with scars from the needles and canula required for each transfusion. The transfusions can only be short-term treatment as it is very damaging for anyone to receive so many transfusions – it often leads to severe liver damage.

We are lucky that Emilia’s illness was spotted quickly; she is now receiving some great treatment, but this will only help sustain her life in the short term.

The best way of treating the illness is for Emilia to receive a stem cell/bone marrow transplant from someone who is a suitable match. We are greatly appreciative of anyone who is willing to be tested to help Emilia and others like her with these devastating conditions.

As a family we have been tested, but none of us our a suitable match so it will be potentially a long wait whilst a match is found. Emilia will need to continue visiting the hospital in both Worcester and Birmingham as the town where we live there is no paediatric care facility.

Visiting the hospital is having an effect on our finances as well as our normal family life, especially for her older sister. Weekly trips (sometimes twice a week) are routine.

If we are lucky and find a match for Emilia then she has a long painful road ahead. She will receive chemotherapy just like a cancer patient in order to kill off her existing stem cells/bone marrow. This will mean months in hospital on a children’s cancer/oncology ward, as she will have no immune system and be susceptible to infection whilst receiving treatment.

With Emilia having to spend months in hospital, one or both of us will have to take a considerable amount of time away from work in order to be there for her whilst she is in hospital, and also to help her recovery when she does eventually come home.

When she has her transplant we will also have to purchase specific brand new items such as clothing, toys and suitcase so as to try and prevent infection as her immune system will be non existent.

How can you help?

We are grateful for any contribution (no matter how small) to help with Emilia’s expenses during her treatment over the next year or so. We would also like to send any funds we don’t need for Emilia to the Grace Kelly Trust, DKMS and the Aplastic Anaemia Trust. These are 3 great charities that help support children and families in the same situation that unfortunately we find ourselves in.

Thank you for taking the time to read Emilia’s story