In 2014 Bertie was diagnosed with Ullrich congenital muscular dystrophy (UCMD). This is a progressive muscle weakness condition that impacts the muscles used for movement and breathing and sometimes the heart too. He is now nearly 12 and uses a power wheelchair. Unfortunately he has started to have scoliosis (curve in the spine), which we had desperately been trying to avoid.
Bertie's Buccaneers is a Family Fund of Muscular Dystrophy UK (MDUK), a national charity. The funds we raise go directly into the Ullrich CMD appeal and 100% fund scientific research. Ali (Bertie's mum) is a Lay Research Panel member for MDUK and helps to represent the interests of the community.
Including funds we've raised via JustGiving and elsewhere, we've raised around £40K but generally one research project into a treatment can cost around £250k+ When you have something rare - Bertie is 1 in a million - it is very difficult to raise those funds.
Thank you everyone who has undertaken an event and donated. We appreciate you!
Ali & co xxx
