The reason I am raising money:

My Mummy was diagnosed with Facioscapulohumeral muscular dystrophy when she was 26 after her shoulder came out of place due the muscles wasting away. FSH is a degenerative hereditary condition which can leave those affected in a wheelchair. My family history with this condition is pretty extensive. From my Mummy, to my sisters, to my cousins, to myself, and most recently, my little niece Emma who is aged just 10 which is essentially why I'm doing this.

Those are the facts. Our reality is something different. We love to laugh, we love to joke, we love to argue, and we love to love. This condition does not define us as a family. The dancing around the table, the five conversations at once, the learning harmonies of the Mamas and Papas, the overt justification of love we have for each other is exactly what makes us, us. However, we realise that this condition is not as 'popular' as other disabilities and in turn does not get as much consideration as other dibilatating diseases. Therefore a lot of ignorance surrounds it. And this is why it's important to raise people's awareness by letting them know there is a reason for not being able to get up in the morning, for feeling lethargic, for random muscle spasms, for tripping and falling over when there's nothing to fall over, for not being able to walk very far, for not being able to blow up a balloon or drink from a bottle, for struggling to walk upstairs, for having a weak grip on things and for having aching muscles. My mission is not a sad, pull on the heart strings story, it is a submission of how to take something that can be viewed as negative and make it into something positive. Because seeing the brighter side of life is exactly what we, as a family, are about. This is simply, to make you understand what FSH is, so that life will be that little bit easier on Emma, so she won't need to explain all the above anytime she feels any of it.

So, I pledge to do one thing a year in order to raise your awareness about this, in some cases, debilitating disease, starting with a skydive.

My heart and my reality are now your knowledge.

That's all.

Cathy xxx