A FAMILY from Melksham is hoping the local community can help them raise £15,000 to make essential life changing improvements to their home.
John Howell from Melksham was diagnosed with motor neurone disease (MND) in November 2014 and now he and his family need to raise £15,000 to covert their garage into a downstairs bedroom and wet room to make John’s quality of life that little bit better.
MND is a rapidly progressive fatal disease with no known cure. It effects and then attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
John said, “For about a year before it was diagnosed I had noticed a weakening in my left arm and then when I walked, my left leg dragged slightly. So I went to my GP but they thought it might be a muscular problem so referred me to the RUH.
“I had various scans and tests and eventually had an operation on my shoulder. It was then that the surgeon suspected it was a neurological problem and not muscular and not long after that, doctors confirmed it was motor neurone disease.
“It was a big shock to us all. I had heard about MND but I didn’t really know anything about it in detail. Once I knew a bit more it was devastating news because I’ve always been so active. I enjoyed walking, fishing, photography, cooking, gardening and tinkering around with cars, so knowing I wouldn’t be able to do those things any more was very hard.”
John’s wife Sally said, “He has lost the use of his left arm completely now and his right arm is going the same way, and he is rapidly losing the use of his legs. We don’t know from one day to the next what John will be like, which is one of the hardest things.
“Soon John won’t be able to use his legs and although we hope to have a stair lift put in, he won’t be able to get from the top of the stairs to the bedroom or bathroom. So what we need to do is convert the garage into a downstairs bedroom and wet room.
“The cost of the conversion is estimated at £15,000 and unfortunately we haven’t got that sort of money. That’s not to say we are poor, we have a pension and have relatively comfortably lives, but we simply do not have the savings to do it.
“Social services aren’t able to fund it and we haven’t had any luck with grants. We are asking for help because this is our only option.
“The downstairs bedroom and bathroom is essential because John would be able to live at home safely and with dignity.”
John continued, “When people ask me how I am, I just say that I’m fine because it is very hard to explain how I feel about it all. I tend to put on a brave face but I have low days and I get quite upset about it all.
“We have to be realistic about my situation. There will come a time when my legs won’t carry me anymore and for what ever time I have left, be it three years or five years, I’d like to have a decent quality of life.
“Having the room downstairs will help me to lead as normal a life as possible and spend my time with my family. It really would change our lives. It’s such a cruel disease and so hard to live with.”
The Howell family are hoping the local community will help them by fundraising or organising events to raise the money. Sally said, “We would be so grateful if anyone could help us by holding a fundraising event to help raise the money.
“It’s very hard for us to ask people for help because there are so many people in need, but if anyone could help us with fundraising, we would be hugely grateful.
“We aren’t going to build anything fancy, it will only be what is required, and any money left will go to the Motor Neurone Disease Association.”
John continued, “It’s very frustrating when your brain is absolutely fine and is still functioning perfectly well, but the rest of your body is giving up. The smallest of tasks are impossible, like opening an envelope or opening a packet of crisps.
“I don’t want anyone to feel sorry for me because we all have our crosses to bear, and this is mine, and you just have to accept the cards you’re dealt and try and stay positive.
“As well as raising money we would love to raise awareness about the disease because it doesn’t get any publicity and the Motor Neurone Disease Association receive no support from the government for research. June this year is nominated as MND Month in order to raise awareness of the disease and hopefully raise funds for further research into a cure.
“Things have changed quite a bit since the diagnosis. Sally is now my full-time carer because I can’t do anything for myself. We used to enjoy doing lots of things together, but that’s all changed. She has to look after me now. We’ll be married 46 years in March and I’m very lucky to have her.”
If you would like to help the Howell family fundraise then call Sally and John on 01225 706878 or to donate you can visit https://crowdfunding.justgiving.com/garage-conversion
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