Hi everyone, this is my brother Harry.

We recently did a fundraiser but still have a long way to go, so I have set this page up hoping people can help.

Only 1% of babies born with Myotubular Myopathy survive their first year.

Harry has defied all the odds and reached the ripe old age of 22. However, he does pay a price for his determination and is totally wheelchair dependent. This has a massive impact on Harry's day to day living and is also now affecting his mental wellbeing. Action is 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 all the other medical equipment that is needed daily to support his mobility, 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.

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. Allowing Harry the space that a young man of 22 needs, and the room for an extra bed should harry need care through the night.

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 I 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 £20,000 to contribute towards the final costs of this project, Please, please help us achieve this and make a massive difference to the person in my life who means the most. He truly deserves the world.

Thank you for reading and best wishes to you all.