This is Harry.

Harry is 21 but shouldn't be !! Only 1% of babies born with Myotubular Myopathy survive their first year . Myotubular Trust

Harry has defied all the odds and reached the ripe old age of 21. However, he does pay a price for his determination and is now totally wheelchair dependent. This has had a massive impact on Harry's day to day living and is also now affecting his mental wellbeing . Action is now needed to enhance Harry's life and alleviate both the physical and mental pressures he now suffers.

Harry's bedroom in the family home is far too small to accommodate him, his wheelchair and other medical equipment that is needed daily to support not only his mobility but his breathing and feeding.Due to being in constant pain Harry spends most of his time in bed as this provides a little relief but he is cut off from the rest of the family when they are all downstairs.

We are wanting to build a specially adapted single storey extension to the main house which will include a ceiling hoist , enough room for Harry to manoeuvre his wheelchair and of course all his other equipment , also allowing Harry the space that a young man of 21 needs. There will also be the facility to enable a carer to stay overnight with him when needed and Harry will have access to the main house for him to socialise when he is well enough to do so.

We have approached D.I.Y. S.O.S on numerous occasions but sadly have never been contacted back.We have also contacted our local council for funds to complete the build but have just been given an allowance towards it which is nowhere near the amount we need . That's why we decided to set this page up in the hope that we can raise the funds required to give Harry some independence back and the space he needs to move around in.

We are hoping to raise £50,000 to contribute towards the cost of this project, Please, please help us achieve this and make a massive difference to that 1% baby who is now 21 !!