Dear Friends and Family, here's a story about a beautiful and full of life 6 year old girl - Amelie. It's a story of two mothers, where both of us: Lucy (Godmother) and Magda (Amelie's mum) have decided to do something very special every year in order to raise awareness and money for Muscular Dystrophy UK. This year is a SKYDIVE!!!

Amelie was diagnosed with Ullrich CMD 2 years ago. Until then we lived in hope that regular physios, swimming, horse riding, splints and night gaters will help her to get better and improve her life. However, it's not like that with Ullrich.

What's Ullrich congenital muscular dystrophy? Congenital means 'from birth', and condition is caused by mutation of genes which produce collagen VI, which is like a scaffold for our muscles. Therefore, the joints of the hands and feet have 'bendiness', while the elbows, hips and knee joints have 'contractures'. The spine can have a curvature (scoliosis) or 'stiffness'. Respiratory muscle weakness and insufficiency develops over time, with the need for night-time ventilation. It’s one of those conditions that needs lots of clinical trials and continues research so we can finally find a solution and some form of cure. Our wish for Amelie is to have a full and exciting life with no restrictions but to achieve that we need your help. Both of us will be taking a challenge in 3 weeks’ time and hope you can support us both with whatever you can spare. We need to admit that we are a bit scared, but it’s been on our minds for a while so our first ever Skydive is in Amelie’s name.