A man who has been trying to enter the London Marathon for years has finally got his place and will use it to fundraise for a rare disease charity.

Gideon Hedley from Bicester, Oxfordshire, has tried for 15 years to gain a ballot place in the London Marathon, and this year he managed it.

Mr Hedley decided he would like to put his place to good use by fundraising for rare disease charity, Myaware, the only UK charity to support people living with the rare neuro-muscular condition myasthenia.

Myasthenia is a long-term condition that causes muscle weakness, and can bring about problems with talking, walking, swallowing and breathing.

It can affect anyone of any age, at any time and can be fatal if left untreated. There is currently no cure.

Mr Hedley said: “In 2013 my father came back from a holiday in France with double vision, drooping eyelids, and difficulty walking.

“As time went by making facial expressions, chewing and eating became difficult for dad.

“We were not really getting any answers to what the issues were.

“Eventually, after, time, he was diagnosed with Myasthenia Gravis (MG). The support and help he received from Myaware once he had been diagnosed made a huge difference to him.

“He started attending conferences and meeting others with MG and Myaware was instrumental in giving guidance and assistance in reaching the right consultants.

“With help from Myaware he regained his confidence and understood what limitations he might have going forward, and they provided a massive amount of information and support which is still ongoing today.

“Currently dad’s symptoms are being well managed day to day.”

National Fundraising Manager for Myaware Helen Critchlow said: “We are extremely grateful to Gideon for thinking of Myaware.

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“He will be one of seven more Myaware runners who are taking on the London Marathon on October 2, 2022, and fundraising for Myaware.

“Not only will Gideon be raising vital funds, but he will also be raising awareness of this little-known condition.

“Good luck and thank you Gideon.”

The charity currently supports around 3000 people living with myasthenia, and their families and carers.

It is estimated that there are approximately 12,000 people living with myasthenia in the UK.

In the last five years, Myaware has spent over £1 million on research into the group of diseases known and ‘myasthenias’.

Anyone living with myasthenia can find information about the condition and find support by visiting www.myaware.org

To help Gideon with his fundraising please visit: https://www.justgiving.com/fundraising/gideon-hedley1


Read more from this author

This story was written by Matthew Norman, he joined the team in 2022 as a Facebook community reporter.

Matthew covers Bicester and focuses on finding stories from diverse communities.

Get in touch with him by emailing: Matthew.norman@newsquest.co.uk

Follow him on Twitter: @OxMailMattN1

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