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Tom Smith avatar
Tom Smith

Please help me raise money for Congenital Myasthenia

cycling from Paris to Florence for Myaware - Fighting Myasthenia Together because I want to raise money for Myasthenic Kids

97 %
£9,733.07
raised of £10,000 target
by 151 supporters
Donate

Myaware - Fighting Myasthenia Together

We increase public and medical awareness to support people with myasthenia

Charity Registration No. 1046443 (England & Wales) and SC044744 (Scotland)

Story

Thanks for taking the time to visit my JustGiving page.

In June 2013 I'll be cycling solo from Paris to Florence. Approx 850 miles over 14 days. All money raised will be donated Myasthenic Kids, the childrens branch of the MGA. 

Congenital Myasthenia is an extremely rare genetic condition (1 or 2 in a million) which is close to my heart as our lovely daughter Florence suffers from it. It causes severe muscle weakness, causing a breakdown in communication between nerve and muscle: this results in a loss of effectiveness of the muscle. The weakness commonly affects the muscles of speech, swallowing, eyes or breathing, as well as the legs, neck and arms. It is present from birth, although in some cases appears at a later stage. There are various types of genetic mutations, meaning some children can have it worse than others, some have to have feeding tubes into their stomachs as they cannot swallow, need the use of wheelchairs, can have apnea, and many spend a lot of time in hospital. 

Myasthenic Kids is a charity that aims to support children with this rare condition, and the parents and carers that look after them.

Your money will be greatly appreciated and will make a difference to families and children with CMS.

Please follow the link http://www.paris2florence.co.uk to find more info on Florence, and my trip. Everything will be posted here, including sponsors, extra fund raising (raffles, car boots etc) This page will be updated before and during the trip.

Here is a link to the Myasthenic kids website with some stories of other children with the condition.

"Imagine having no strength in your arms, or legs, or even the strength to keep your eyes open, or to chew, or even the energy to breathe.....Imagine being young, with an active and inquisitive mind, with a desire to live an active and fulfilling life.

These are the frustrations and challenges faced daily by children with Myasthenia....

For parents, imagine the anxiety of discovering your child has a condition no one has ever heard of...imagine the feeling of isolation, uncertainty and fear about the future.

Myasthenic kids is a charity which aims to support children with this rare condition, and the parents and carers who look after them." 

Please tell everyone you know, if you cant afford to donate money, perhaps you could give us something to sell? We are planning on doing a car boot, with all proceeds to the charity.

 

 

 

 

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