Seeing what a small charity can achieve has spurred Yapton man Nigel Wilton to attempt the Brighton Marathon on April 9 to support it.
He has faced setbacks during training but is determined to do his best for Myaware – Fighting Myasthenia Together, because it is a small charity that really makes a difference.
Nigel, 41, of Cherry Avenue, has been friends with Barry Joinson since he was two, when they went to playschool together. Barry’s sister, Kirstie Nash, suffers from myasthenia gravis, a rare and incurable disease.
Nigel started running two years ago and raised more than £800 for Myaware, having seen how the charity has supported Kirstie.
Nigel said: “This horrible debilitating illness affects my best friend’s sister and I’ve seen what a difference the money makes to them and her, so would like to raise some more by running the Brighton Marathon.
“I’ve really struggled with my running over the last two years, suffering lots of setbacks with my knees, and really didn’t know whether I’d actually be able to complete the distance.
“I had a major setback in November after running 13 miles which put me out of action for seven weeks so I’m on the back foot a little.”
Nigel has covered 500 miles in training and was back up to 18 miles in one stretch by the end of February.
Myastenia gravis is also known as ragdoll syndrome and Kirsty was diagnosed five years ago.
She said: “The disease can render sufferers so weak that they are unable to move limbs and it can affect breathing, swallowing and vision.
“It has been an incredible rollercoaster ride, both coming to terms with the illness and making huge changes to adjust to a new way of life.
“I have to say I am totally overwhelmed by the efforts of all my friends and family who have taken part in charity events to raise money for Myaware.
“This is the second time Nigel has done this, he is one of the kindest people I know. He is very humble and doesn’t make a fuss. In fact none, of us had any idea that he was doing this until we saw the link on Facebook.
“I feel proud and privileged that people are prepared to push themselves to the limit in an attempt to raise money for our small charity. I can’t thank Nigel enough.”
The charity offers a free counselling service for members as, at times, the illness can be very depressing. Outwardly, the suffer may appear completely normal but inwardly may be suffering from extreme fatigue, nausea from medication, fear of an attack or crisis and family problems, where in some circumstances the family struggles to understand why the sufferer cannot just shake it off.
In addition, Myaware runs a forum, which is invaluable to members for bouncing ideas around and asking advice.
Myaware offers a free advice service for those needing help applying for benefits, blue badge applications and employment issues.
Members also have access to a specialist nurse, which Kirsty has found to be invaluable.
“It is not always easy to get immediate appointments with GPs, so this nurse is a point for contact for any queries, help and advice and is the conduit to the neurologists.
Visit www.justgiving.com/fundraising/Nigel-Wilton1 to make a donation.
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