Danielle Louise

Danielle & Thomas, Meghan & Ewan, Helen & Biz - Raising money and awareness for The Aplastic Anaemia Trust

Fundraising for The Aplastic Anaemia Trust
raised of £1,000 target
Donations cannot currently be made to this page
Peak District Walk , 24 February 2024
Be there for people living with aplastic anaemia and join our annual Super Rare campaign! You’ll help us deliver expert emotional and practical support and information - and earn yourself an exclusive Super Rare tee!


Today I share my story to help raise awareness of Aplastic Anaemia, and to help raise money for this fantastic Aplastic Anaemia Trust.

In December 2022 after weeks of being poorly and told I it was just a viral infection, my GP finally allowed me to have blood tests that I had been fighting for. I knew how I felt and I knew something just wasn’t right. I was told the bloods would take around a week to come back being so close to Christmas and thought nothing more of it.

The next morning, I received a panicked phone call from my GP telling me that I needed to go straight to A&E at St James’s, where they were expecting me because I needed transfusions immediately as my haemoglobin was so low. These were all words I didn’t understand at the time so panicked and off I went.

Arriving at A&E, things seemed calm so the panic within me dropped and I thought okay, I must be okay. I was called in to the evaluation room where my bloods results were discussed and taken again and the sheer shock in the nurses’s face as she went to find the doctor - the panic back. I knew then I was going to be admitted.

I still remember the doctors who took me up to the Teenage Cancer Ward, and I remember shaking every time I saw them because I associated them as coming with bad news. Little did I know one of them would become my Bone Marrow Transplant (BMT) doctor, who I would see weekly for the foreseeable. Following a bone marrow biopsy and an anxious week long wait, I was diagnosed with Very Severe Aplastic Anaemia on the 29th of December 2022. Because of what it could have been, I heard the word anaemia and instantly felt relieved thinking thank god I am going to be okay - it’s only anaemia! How wrong was I.

Aplastic Anaemia is a rare blood disease which causes your bone marrow to stop working properly. This meant that my body was not producing enough new red blood cells, platelets, white blood cells and neutrophils which your body needs in order to survive and fight diseases and other illnesses. When I was first diagnosed, Aplastic Anaemia affected 1 in a million people, however now the number has risen to 2 in a million. I know this is still a very small amount, but it shows it is slowly on the rise and awareness is key!

I remember being sat in my first consultation and hearing worlds such as transfusions, bone marrow transplant, related and unrelated donors and chemo therapy and realising just how ill I was. I was petrified of what the future held for me and straight away panicking again that I was going to die. I remember the doctor saying this would be at least a two year journey and thinking how am I going to live this life for the next two years. But here I am still going through it and feeling grateful for the second chance I have.

Within the past year, I have undergone various treatments. I live off weekly transfusions and have undergone two surgeries to have different lines put into my body ready for transfusions and treatment. In March 2023, I received ATG, a form of treatment which tries to suppress the immune system to give your bone marrow a chance to boost itself to start working again. Unfortunately, this did not work for me. Then it was time for the big one - a BMT. This had always been the form of treatment that scared me the most as the risks were much bigger and it involved the use of chemotherapy.

In December 2023, I was very fortunate to find a 12/12 unrelated donor match which is a 1 in 800 chance. I will forever be grateful for the second chance of life she has given. I got through it and feel like I was very lucky with the side effects I felt from the treatment. My numbers were slowly starting to rise and after 3 weeks, I was able to go home.

On the whole I am doing okay, but I still need to take each day as it comes. Till this day, I am still reliant on the blood donations of strangers which keep me alive. I always saw the adverts and vans encouraging people to give blood because it saved lives, and never ever thought that would be me. I still have a long journey ahead of me, but I am grateful for what I have learned and to have the voice to share my journey with others.

You never think it is going to happen to you or someone you may know, and overnight things can literally turn your world upside down. If you are able to spread the awareness of Aplastic Anaemia or make a donation, please do. I am still navigating my way through my journey but I want to share my story to help raise awareness of Aplastic Anaemia and to help raise funds for those suffering or who may suffer in the future. The charity is one of a kind and offer such a vast range of services which has supported every step of my journey and every unknown. Everyone’s journey is so different and to have the on going support from the Aplastic Anaemia Trust and its community is amazing. I know it has helped me stay strong every step of the way throughout my journey.

About the campaign

Be there for people living with aplastic anaemia and join our annual Super Rare campaign! You’ll help us deliver expert emotional and practical support and information - and earn yourself an exclusive Super Rare tee!

About the charity

The Aplastic Anaemia Trust

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RCN 1107539
The Aplastic Anaemia Trust

Donation summary

Total raised
+ £331.75 Gift Aid
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