The Aplastic Anaemia Trust

Why I’m fundraising for The Aplastic Anaemia Trust

Neil Jones

Neil Jones

My Story

My brother-in-law Andy was diagnosed with Aplastic Anaemia in January 2025. A quick timeline of his diagnosis...

Andy had been unwell for some time, initially putting it down to working longer hours in the run up to Christmas 2024. However, over the festive period he struggled to find the energy to do anything and unexplained bruises began to appear. He also looked a bit yellow, like he had jaundice. But, he had a snowboarding holiday booked and was looking forward to that more than bothering the GP!

However, whilst on a New Year's walk with his sister (Sarah) he talked about his symptoms and finally agreed to go to his GP. He was immediately referred to hospital to have blood tests where he remained for 10 days. 

During that first admission he received his diagnosis of Aplastic Anaemia. He's actually 41. While most cases are in the young (10 or younger) or elderly (60+), it can affect any age. But it was unexpected. There are some theories as to what causes this very rare disorder, but no-one knows for sure.

Aplastic Anaemia affects the bone marrow's ability to create red blood cells, platelets and white blood cells. Andy’s bone marrow was analysed and it was discovered that he had a very severe form of the disorder. This meant his immune system was compromised and he became reliant on blood and platelets transfusions to survive. He was told he was unable to work or drive and that he would have to have hospital appointments 3 times a week. Due to his suppressed immunity this meant he needed lifts to hospital in order to avoid catching a virus that he probably wouldn't be able to cope with.

By February he underwent ATG (Anti-thymocyte globulin - immunosuppresive therapy) treatment which required a PIC line to be fitted, delivering his treatment near to his heart. After a two week stay he was allowed to go home but continued to be monitored 3 times a week. Over time it was thought his ATG treatment had been unsuccessful and due to the severity of his condition a stem cell match was needed. Unfortunately Sarah wasn’t a match, but thankfully a near exact match from USA was discovered (this made us appreciate the kindness of kind people who donate). While all of the necessary tests were happening in the background, Andy was still receiving blood and platelets transfusions. 

Early June, just as Andy was getting ready to go into hospital to start his chemotherapy treatment in preparation for his stem cell transplant, it was found that some of his blood indicator levels were going up. It was decided that the team would pause the stem cell treatment and watch and hope that the ATG treatment was finally beginning to work. 

And this is where we are now. It's not over. It's not exactly a relief, but it's a positive moment in Andy's treatment. Andy has still got a long way to go. He will need to undergo another bone marrow aspiration to assess how effective the ATG ultimately has been. He continues to have blood tests at the Queen Elizabeth Hospital in Birmingham (what an amazing team they have) and we continue to keep our fingers crossed that his condition will improve. Whatever happens this year, Andy will need tests throughout his life.

Aplastic Anaemia is an ultra rare condition and the Aplastic Anaemia Trust has been a central part of our journey as a family. The information they provide both in terms of financial and practical support has been essential. Having them on hand has been a life line. They even have a Facebook page so patients, families and friends can connect and support each other.

So, that is is why I am running to support this essential charity and the work they do to support people like Andy, my wife Sarah and others who have their lives turned upside down in a heartbeat from this rare but life threatening condition.

I had never heard of this condition before Andy was diagnosed but it really has shed a bright light on the work that organisations such as AAT do. Treatment advancements and patient support through the AAT is only possible through the generosity of people that donate whatever they can. There are many fabulous charities in the UK, but I hope that some of you will choose the AAT and sponsor my London 2026 Marathon run next April. They need the help and we thank you all in advance.

155%

Funded

  • Target
    £1,000
  • Raised so far
    £1,554
  • Number of donors
    52

My Story

My brother-in-law Andy was diagnosed with Aplastic Anaemia in January 2025. A quick timeline of his diagnosis...

Andy had been unwell for some time, initially putting it down to working longer hours in the run up to Christmas 2024. However, over the festive period he struggled to find the energy to do anything and unexplained bruises began to appear. He also looked a bit yellow, like he had jaundice. But, he had a snowboarding holiday booked and was looking forward to that more than bothering the GP!

However, whilst on a New Year's walk with his sister (Sarah) he talked about his symptoms and finally agreed to go to his GP. He was immediately referred to hospital to have blood tests where he remained for 10 days. 

During that first admission he received his diagnosis of Aplastic Anaemia. He's actually 41. While most cases are in the young (10 or younger) or elderly (60+), it can affect any age. But it was unexpected. There are some theories as to what causes this very rare disorder, but no-one knows for sure.

Aplastic Anaemia affects the bone marrow's ability to create red blood cells, platelets and white blood cells. Andy’s bone marrow was analysed and it was discovered that he had a very severe form of the disorder. This meant his immune system was compromised and he became reliant on blood and platelets transfusions to survive. He was told he was unable to work or drive and that he would have to have hospital appointments 3 times a week. Due to his suppressed immunity this meant he needed lifts to hospital in order to avoid catching a virus that he probably wouldn't be able to cope with.

By February he underwent ATG (Anti-thymocyte globulin - immunosuppresive therapy) treatment which required a PIC line to be fitted, delivering his treatment near to his heart. After a two week stay he was allowed to go home but continued to be monitored 3 times a week. Over time it was thought his ATG treatment had been unsuccessful and due to the severity of his condition a stem cell match was needed. Unfortunately Sarah wasn’t a match, but thankfully a near exact match from USA was discovered (this made us appreciate the kindness of kind people who donate). While all of the necessary tests were happening in the background, Andy was still receiving blood and platelets transfusions. 

Early June, just as Andy was getting ready to go into hospital to start his chemotherapy treatment in preparation for his stem cell transplant, it was found that some of his blood indicator levels were going up. It was decided that the team would pause the stem cell treatment and watch and hope that the ATG treatment was finally beginning to work. 

And this is where we are now. It's not over. It's not exactly a relief, but it's a positive moment in Andy's treatment. Andy has still got a long way to go. He will need to undergo another bone marrow aspiration to assess how effective the ATG ultimately has been. He continues to have blood tests at the Queen Elizabeth Hospital in Birmingham (what an amazing team they have) and we continue to keep our fingers crossed that his condition will improve. Whatever happens this year, Andy will need tests throughout his life.

Aplastic Anaemia is an ultra rare condition and the Aplastic Anaemia Trust has been a central part of our journey as a family. The information they provide both in terms of financial and practical support has been essential. Having them on hand has been a life line. They even have a Facebook page so patients, families and friends can connect and support each other.

So, that is is why I am running to support this essential charity and the work they do to support people like Andy, my wife Sarah and others who have their lives turned upside down in a heartbeat from this rare but life threatening condition.

I had never heard of this condition before Andy was diagnosed but it really has shed a bright light on the work that organisations such as AAT do. Treatment advancements and patient support through the AAT is only possible through the generosity of people that donate whatever they can. There are many fabulous charities in the UK, but I hope that some of you will choose the AAT and sponsor my London 2026 Marathon run next April. They need the help and we thank you all in advance.