Bertie was diagnosed with Ullrich’s Congenital Muscular Dystrophy (UCMD), a very rare condition, at a young age. Unfortunately, there is no medicine to fix UCMD as it is a progressive condition with no cure, instead Bertie and his family worry about managing his symptoms to prevent scoliosis of his spine. Bertie is now looked after by neuromuscular, cardiology, community physiotherapy and occupational therapy teams to ensure he can live happily both at school and home.
Despite his condition, Bertie is a happy boy. He loves horseback riding, singing, playing the drums, video games and playing with his siblings.
Due to Bertie’s condition, his family has had to make a lot of adjustments to care for Bertie’s needs. But every once in awhile they need a break from their everyday worries so that they can focus on just having fun as a family.
This is where Starlight steps in.
Earlier this year, Bertie and his sister took part in our At-Home Pottery Activity in partnership with Pot Heads Pottery. We sent them craft boxes filled with all the necessary materials as well as a video instruction on how to make their monster face pottery.