Story

We never knew that our son, Charlie, could smile - a proper, full on smile - until he started a drug called pyridostigmine after he was diagnosed with Congenital Myasthenic Syndrome in November 2008. Without the drug his muscles were too weak to smile, or keep his eyes open properly, chew food and swallow liquid without frequent choking, or to walk and play like other children. Even his breathing was affected by the fluctuating muscle weakness and fatigue. With the drug, however, his life is massively improved although he struggles daily with the impact of this incurable neuromuscular disease. CMS is very rare, and dealing with any rare disease is an incredibly lonely path for a parent. But we eventually found some other myasthenic families and held the first children's weekend in 2009 - 8 families all struggling to manage and support children with the same rare disease as Charlie. Together we formed MyasthenicKids and last year found 21 families like us. This year we hope that over 30 of the 54 UK families we now know of will be able to make what has become an essential annual event. We have learnt so much about how to best manage Charlie's condition, how to ensure he is educated in a mainstream school, how to support him and his brothers both physically and emotionally. And he and his brothers have met other children, other families, like themselves - they've made new friends and the foundations of their own support group as they grow up. We are lucky. Many children are much more severely disabled by their Myasthenia than is Charlie. Many, such as Baby RB and the older siblings of CMS children we know, didn't ever have a chance to smile in the brief time they spent with their families. Nick and I wouldn't have survived the last three years without the MyasthenicKids community. And now we want to ensure that people hear about myasthenia, so that it is considered as a possible diagnosis, and that other, newly diagnosed families have somewhere to turn from the day they are diagnosed. All myasthenic children should be able to smile! So with help from some wonderful friends we are fundraising for Charlie's Smile :-) Thank you for supporting us x <a href="http://www.MyasthenicKids.org">www.MyasthenicKids.org</a> 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.