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Marc Smith avatar
Marc Smith

Marc's Virgin London Marathon 2014 page

Running the London Marathon 2014 for Myositis UK because I want to raise money for a great cause

109 %
£931.22
raised of £850 target
by 35 supporters
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  • Event: Virgin London Marathon 2014, 13 Apr 2014

Myositis UK

We raise funds for research to help improve treatments & diagnosis

Charity Registration No. 327791

Story

Thanks for taking the time to visit my JustGiving page.

In April this year I will be running the London Marathon. I am not a professional runner nor am I experienced in running such a distance, I am however determined to run the marathon to raise money for a charity that is very close to my heart and means a great deal to my family.

In December 2011, after a very harrowing 6 months of illness, my then 2 year old nephew Henri was diagnosed with Juvenile Dermatomyositis (JDM), an autoimmune disease that is incredibly rare and only effects approximately 3 children in every million per year. Muscle weakness and skin rashes are the main symptoms but it effects every child differently with some children experiencing a mild form whilst others, like Henri, often displaying a more severe progression. Henri stopped walking properly and suffered great discomfort just carrying out his normal day to day activities. 

Henri had a very difficult 6 months prior to diagnosis and had to go through many painfully investigations in order for his doctors to discover what was wrong. Henri has had many blood tests, scans, a lumber puncture, a liver, skin and bone marrow biopsy and also MRI scans. Henri spent many weeks staying at hospital with his parents who were very fortunate to be provided accomodation, kindly run by a charity that provides the hospital with a 'home from home' for parents of very sick children.

Despite everything Henri has been through these last few years he has remained incredibly brave throughout. Henri needs lots of medication including steroids and a weekly injection. These injections are long term and are administered at home. This can be incredibly distressing for us all Involved.

Unfortunately there is no cure for JDM, only treatment to help manage the symptoms. Henri is now 4 years old and is doing well on his medication. Henri still has monthly blood tests and travels to see his doctors/consultants at different hospitals every few months.

The Myositis Support Group is a UK charity providing advice and support to sufferers of Juvenile Dermatomyositis, and their families. The charity works hard to raise awareness of the condition and to raise funds to promote and support research. 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

I would greatly appreciate any support and donations. Many thanks. 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

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