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.
Harry will also have access to the main house so that he can socialise when he is well enough to do so.
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 !!