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Weʼre raising £10,000 to Help Ben to take the trip he of a lifetime, and would never be able to do without your help. Ben has a rare life changing disease....

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Story

Adrenomyeloneuropathy (AMN) is caused by mutations in the ABCD1 gene. This gene is also affected in ALD, a serious degenerative disease that mainly affects young boys. AMN most often appears in adult men. Women can also get AMN, but the condition is usually less severe than in men.

Hi there, My name is Ryan and I am writing on behalf of my friend Ben. When he was 27 years old, he was hit with the news that he had a rare incurable disease called AMN. This horrible disease makes walking unaided impossible. He suffers from spasms, pain, falls and worse almost constantly. He also has Addison's disease which limits the amount of energy he produces. Not only is he unable to walk, he hardly has the energy to stand. He has been doing his best to deal with this condition, but life is getting harder and harder. This will continue to get worse and this disease leads to being wheelchair bound.

I am so sorry to ask people that have never met Ben for help. He is struggling and running out of options. He can no longer work and he does not receive any financial support. As this disease is so rare, the DWP find his claims difficult to approve. He was also forced to sell his house to survive financially.

The worst part of this condition, is the cerebral version. He does not have this but there is a 1 in 2 chance of him getting it. In most cases this will lead to paralysis, brain damage and death. Not something that I like to think about for a 34 year old guy. The conditions that Ben has to deal with could get much worse at any point. So if I can, I want to do something special with your help.

He has always wanted to see Hollywood and a headline comedian in America. I know I shouldn't be asking complete strangers to pay for a holiday. Believe me when I say, this would not just be a holiday. This would be a dream that he would cherish. I am asking for as much help as possible as he is struggling with bills and will soon need to make alterations to his home to help. Anything you can give, would make such a difference. Thank you for reading my friends story.

If you cannot help, I totally understand, but please look into AMN. It is very rare and a horrible life effecting condition. Awareness will help. If you would like to know anything else about Ben's condition or me, please do get in touch.

Forever grateful

Ryan and Ben

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    Page last updated on: 12/3/2018 6:11 AM

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