What is aplastic anaemia?

Aplastic Anaemia is a rare type of bone marrow failure. It's where the bone marrow stops creating all kinds of blood cells. It's really rare and affects 1 in every half a million people. 

Aplastic anaemia treatment is very similar to the treatment someone might have for leukaemia - but because it's so rare, families often don't have access to the same information and support.
Why I'm fundraising for The Aplastic Anaemia Trust
Evie is a beautiful normal 11-year-old girl, she loves pink, painting and playing as a goalkeeper in the village football team that her father is the coach. She lives with her father who throughout this whole process has exceeded every expectation by working full time and doing the hospital visits and main carer.

In April 2022, Evie had just recovered from Covid and was playing a match in goal when she realised she had bruises on her chest and in between her fingers. One blood test at the GP followed by a phone call at 22:30 the same night from Glos Royal Hospital, eventually lead to a diagnosis of Aplastic Anemia.

Aplastic Anemia is a serious and rare disease affecting the blood, where the bone marrow and stem calls do not produce enough blood cells. Treatment for Aplastic Anemia is twofold - supportive management to correct the child's inital symptons and the treatment of the bone marrow failure.

Supportive management is to correct the blood count. In Evie's case this involved blood transfusions of platelets and red blood cells. As Evie needed repeated blood tests and infusions a 'central venous access device' has been inserted. This stays in place all the time and removes the need for repeated injections.

The best option for Evie was to find a bone marrow donor. A donor was found and in september Evie went to Bristol Children's Hospital to stay for 6 weeks. She had a course of chemo and then the matched donor cells were transfused. Evie's body managed to fight and she is now in phase two of the recovery process.

This phase is lengthy, as it takes months for the blood counts to recover and during this time, she will continue to be at risk from infection and bleeding. She still needs transfusions of platelts and red blood cells. Her immune system is surpressed with a drug called Ciclosporin, this is a relatively safe treatment, but only works in six out of ten children. However, when it works it's not perfect and many chidlren relapse after succesful treatment or develop further bone marrow problems later.

All this means that she has to stay at home and is not allowed to mix with other people. This means, no school, no visits from or to friends, no parties , no cinema or any of the other things 11 year olds get up to.

She is keeping incredibly positive and fighting and attends hospital twice a week and continues to struggle with the amount of fluid she has to take and the quantity of drugs.

Her future is unclear and she will need regular check ups for the next few years as some children can relapse and develop aplastic amenia again. These check ups involve blood tests to check her full blood count and for any long term sides effects of the treatments used.

Thank you very much for taking the time to read Evie's story and I know that Evie and her family (especailly her twin sister Mya) would be incredibly grateful for any donations. 
What I'll be doing
Click on the link to see exactly what I'll be doing. ⬇️

https://www.theaat.org.uk/Event/abseil

On the 27th August I will be doing an 80 meters, 262ft and approximately an 8 minute descent down the ArcelorMittal Orbit in London.
The Aplastic Anaemia Trust will cover over half the cost of my abseil as long as I raise a minimum of £300.

As her mother I would like to be able to raise as much as possible for the trust so have set my amount higher.

Any help would be amazing.
The Aplastic Anaemia Trust
The Aplastic Anaemia Trust is the only charity in the UK dedicated to supporting people affected by aplastic anaemia and funding reseach into this rare form of bone marrow failure. 
By donating you'll be....
Funding Research
This year The AAT will be investigating new treatment options, that could offer hope to more people, and improve quality of life for patients and their families. 

Providing support
-Provide a young child with a story book that explains what aplastic anaemia is and what they can expect from a long stay in hospital - making the long and difficult treatment less frightening.
-Make sure there is always some one on the end of the phone. Having someone to talk to who understands, who you don't have to explain your condition to again and again. The AAT hotline ensures no one is alone. Sophie Somers