Join the race to fight a rare disease

HELP IS AT HAND Sara Pollard
HELP IS AT HAND Sara Pollard
Chancellor Philip Hammond. Picture: Getty

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Recently I had the pleasure of meeting Sian Rixson, loving mother to beautiful Emmie who suffers from congenital myotonic dystrophy.

This is Emmie’s story in Sian’s words..

In August 2011 we eagerly awaited the birth of our second child.

Emmie Valentine was born on August 11. Everything should have been fine but on delivery she was very floppy and needed help breathing.

She was whisked off to the neonatal unit after I had just a brief glance in her incubator.

Emmie spent her first 19 nights in neonatal where she underwent multiple tests.

The specialists diagnosed congenital myotonic dystrophy (CDM), a genetic condition that affects the muscular, respiratory and cardiac systems of the body.

The picture was bleak, we didn’t know what to expect and no one could prepare us.

CDM is a progressive and potentially life-limiting condition.

No one person will experience all the problems it can cause and no two people will present exactly the same symptoms.

Following Emmie’s birth, I have found support through other families affected by the condition.

However research is very limited, so ms, along with three other families wanted this to change so started the Congenital Myotonic Dystrophy Fight Fund (cmmd.uk) to raise money for research and support other families.

One initiative we have introduced to raise funds and awareness is Cyber Races, which has a dual purpose.

Firstly, to provide participants with a monthly race, that they can run whenever it suits them within the designated month.

The second reason is to raise money for the Congenital Myotonic Dystrophy Fight Fund.

It is as competitive as any other race – there will be results and a medal for all participants.

All participants need to do is pay the entrance fee (which goes to the charity), run the required distance for that month, provide evidence via a GPS watch or mobile phone application and submit your results.

Races will be monthly and all details can be found at facebook.com/groups/cyberRaces. I hope you can join us.

n So there you have it, yet another brave and truly inspiring story from our community. It’s a true honour to speak out on behalf of these amazing people.

Please share Emmie’s story with who you know, so many more can join the race.