Lets give Leo a lift

Lets give Leo a lift

Leo is a 12 year old boy who was born with an extremely rare form of Congenital Muscular Dystrophy. Leo has a unique variation of Bethlem myopathy muscular dystrophy Col6a2. He is the only person in the world with his variation. Muscular dystrophy is a progressive muscle wasting disease that there is no treatment for and no cure. Just management through therapies and support.

Leos condition has progressed much more rapidly than we expected and as a result we find ourselves in a very difficult situation.

Leo is now a full-time wheelchair user and is now unable to climb stairs.

We live in a 2 story house with the bedrooms on the top floor. We do have a plan to extend and adapt the house but unfortunately this will not happen quickly enough for Leo. We need to utilise every grant available to help us do this adaption. Stairlifts for children are not covered by adaption grants and if we do fight for one it will hamper our grant application for the house. We have exhausted all avenues.

Leo is currently being carried up 14 steps to his bedroom every night. This is unsustainable for us as a family. If Leos dad is not there, Leo can not get to bed. If Leo wants to go to his room for a break or to play his games during the day he cant unless there is someone to carry him.

Leo is a bright, funny young man whos confidence shines for all to see. He is a typical 12 year old who wants to do all the things 12 year olds do, which also includes lounging on his bed in the afternoon. We want Leo to always have his independence and the ability to do all of the things he wants to do.

We need your help. We need help raising funds for a stairlift for Leo.

We have a local company ready to go, they have even offered to kick start our fundraising.

Lets give Leo the lift he deserves.

Thank you,

Susan- Leos mum xxx