Our beautiful son Winston was diagnosed at the age of two with this progressive disease, when we began to notice he was struggling with his balance. Since then, life has changed unimaginably. The disease has no cure and is life limiting. We are told Win may live to his mid-twenties, but the disease carries a high risk of cancers. It is hard to put into words how much the charity have done for us since receiving this news. From supporting us with how to navigate the welfare system to funding equipment, research and coordinating medical expertise when Win has gone into hospital and been met with the panicked faces of consultants who have never encountered the disease, they have never let us down. And just as importantly, at those moments when we just don’t know quite how to cope, they have been another family member to us, always listening, always understanding, without judgement.
Due to the extremely rare nature of the disease, it is all the more important that we raise awareness as much as we can. That is why the Hundred Hulk challenge is so brilliant. We can’t fail to be noticed! If there is any part of you that thinks you, or someone you know might just be able to get around the route in some green face paint, please, please get in touch because YOU CAN!