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In Memory of Michael Nash

1 fundraiser

https://uk.virginmoneygiving.com/SomeoneSpecial/

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Total raised so far £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Story

[p]Below is some information on Michael Nash and his life living with PNH and Aplastic Anaemia[/p] [p]&nbsp[/p] [p]We know all who knew him would like to help and you can do so by either donating money, giving blood, or signing up to the Bone Marrow Registry. To do all three would be amazing!![/p] [p]&nbsp[/p] [p]Details on all the options are at the end please help if you can.[/p] [p]&nbsp[/p] [p]-------------[/p] [p]&nbsp[/p] [p]After battling with a rare illness for the past 11 years, Mike passed away, just 28, on 29th&nbspJanuary 2016. This came as a terrible shock to his friends and family who watched him fight for many years and overcome huge hurdles.[/p] [p]&nbsp[/p] [p]At 17 years old Mike was diagnosed with Paroxysmal Nocturnal Haemaglobinuria PNH - a rare blood disorder and Aplastic Anaemia a form of bone marrow failure. This complicated illness meant that not only was he very low on blood, making him blood transfusion dependent, but also prone to blood clots and other side effects. Yet, despite it all, he barely let it get him down and was determined to make the most of every day.[/p] [p]&nbsp[/p] [p]With Michaels health becoming more and more difficult to manage we badly needed to get funding for a drug, which had changed the lives of those receiving it. After months of fighting, we managed to secure funding for all of those in need, establishing a system of healthcare for new genetic drugs that was the first of its kind in the world. A reception was held with MPs at The Houses of Parliament in recognition of this.[/p] [p]&nbsp[/p] [p]Over the years Mike had battled against bacterial Meningitis three times, renal failure, a benign tumour on his liver, iron overload from transfusions, a number of operations, endless infections and time spent in hospital. However, he had a real lust for life and rarely let people see how much pain and discomfort he was often in or how much he struggled day to day.[/p] [p]&nbsp[/p] [p]In 2012 Michael and his girlfriend decided to travel together to Australia but he was challenged by the fact that no one in the world had ever received the drug he needed in another country before. In fact, only a handful of countries even had it licensed. He managed to persuade the NHS to set up a reciprocal arrangement with the Australian health service to provide care for him all over Australia - a system that is now copied by other countries around the world. He required an infusion every two weeks, so they put together a schedule enabling him to travel around and reach each hospital in time. Administering the drug is so advanced that some hospitals had to run a specialist training course for doctors/nurses before he arrived for his infusion.&nbsp[/p] [p]&nbsp[/p] [p]Michael returned to London in 2013 and made advances with his music but backward steps with his health as his bone marrow grew weaker.[/p] [p]&nbsp[/p] [p]In the last few months, Michaels health declined further and he was forced to consider the possibility of a bone marrow transplant. After so many transfusions and different treatments, he was told there was a high chance he would not survive it. As his sisters were found not to be matches, a match would have to be found through the Bone Marrow Register. Against this backdrop of continual worry and stress, he still carried on bravely and many who knew him were barely aware of the true situation.&nbsp[/p] [p]&nbsp[/p] [p]Despite his complicated and debilitating illness, Michael lived life to the fullest and made everyday count. He was a strong believer in positive mental attitude and always seeing the silver lining, even in his darkest times. He was an inspiration to everyone around him and would want us share his story to help anyone in a similar situation.[/p] [p]&nbsp[/p] [p][b]How can you help [/b][/p] [p][b]&nbsp[/b][/p] [p][b]Fundraising[/b][/p] [p]&nbsp[/p] [p]Michael has been supported by the Paroxysmal Nocturnal Haemoglobinuria PNH team at Leeds for over 10 years. He and his family played a big part in the support of developing a PNH National Service for patients and families across the country. Michael was always keen to see an increase in research in the area to extend understanding of the disease and of treatment possibilities. The PNH team have a registered charity for increased research and support to people with PNH.[/p] [p]&nbsp[/p] [p]The Aplastic Anaemia Trust AAT also provided support to Michael and his family for many years, this charity receives no government funding and relies completely on donations and fund raising events. Though Aplastic Anaemia is a life threatening form of bone marrow failure which is as common as some types of leukaemia, and just as devastating, very few people have heard of it so donations are absolutely crucial.[/p] [p][lt]br /[gt] Your money will go towards supporting both charities, but we have chosen to direct 70% of the donations to PNH research and 30% to the Aplastic Anaemia Trust. Due to the rarity of PNH, it is Michaels wish that those suffering are not neglected and that the doctors who have supported him for many years can continue their work and help those still battling with the disease. [lt]br /[gt] [lt]br /[gt][/p] [p]All donations are gratefully appreciated by both and will be used to continue funding research, treatment and providing support to sufferers and their families.[/p] [p]&nbsp[/p] [p][b]Blood and Bone Marrow Donations[/b][/p] [p]Michael was extremely passionate about giving blood and had aspirations of raising awareness and increasing the number of blood donors, particularly among young people. In his memory, we are going to bring his vision to life but this will take time to do properly and we hope to carry this out over the next few months. In the mean time, please visit [url=http://www.blood.co.uk]www.blood.co.uk[/url] to find out where you local donor centre is. Without people giving blood, we would not have had the time with Michael that we did.[/p] [p]Once you are a registered blood donor, those aged between 18 and 49 years old you can join the British Bone Marrow Registry and the next time you give blood will be as simple as the first. If you are a possible match, you will be contacted to discuss next steps. The donation is a simple procedure either blood taken or some liquid from your hip bone which can help treat and often cure conditions such as Aplastic Anaemia and lots of other diseases. For more information, please see [url=http://www.nhsbt.nhs.uk/bonemarrow/]http://www.nhsbt.nhs.uk/bonemarrow/[/url][/p] [p]&nbsp[/p] [p]Thank you in advance from Michaels family and many friends.[/p]

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Supporters

Apr 16, 2019

Kris

Love you Mike you legend!

£30.00

Mar 22, 2019

Dana

Sending love xxx

£15.00

Mar 20, 2019

Brenda hoskison

Such a lovely young man is so sorely missed xxx

£10.00

Mar 20, 2019

Anonymous

£15.00 plus £3.75 Gift Aid

Nov 24, 2018

Emma Raeburn

111 love xxx

£20.00 plus £5.00 Gift Aid

Jun 20, 2018

Max

£30.00

Jul 29, 2017

Bridie John and family

£100.00 plus £25.00 Gift Aid

May 22, 2017

Mumz

Love you my boy xx

£111.00 plus £27.75 Gift Aid

May 17, 2017

Beth George

£50.00

May 15, 2017

Margaret

Our family will always have such happy memories of Mike - never to be forgotten....

£50.00 plus £12.50 Gift Aid