I have found over the years, having such a rare condition that I felt left out a lot of the time.
There are many charities that can help children with many well-known conditions like cancer but not really many out there specifically for rare diseases.
My aim is to help all those children who suffer from rare diseases and give them a chance to SMILE.
Whether it may be a family day out to make memories, something in the house to help that child, making it possible for them to meet some stars or footballers or even a tutor to help with their school studies because they have missed out on so much.
I just want to make sure that all these children are not left out and are as important as any other child. If I can make it possible to make them SMILE, even if it is only for a day, it will mean we have succeeded in what we set this charity up for, to put a SMILE on their face.