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A friend of our family, Kevin, was diagnosed with Myotonic Muscular Dystrophy when was 33 years old, one month after his son was born whilst raising his 2 year old daughter along with his wife, Sandra.  Over a period of time Kevin's muscles deteriorated and the condition got progressively worse. 

At first, it was just the simple things like not being able to open a bottle or turn a key. Eventually he was unable to walk more than a few steps, even with help. Kevin was 6 foot 4 inches and Sandra  was 5 foot, so you can imagine it wasn't easy for her, but she always found ways to manage it.

He needed help with every aspect of life that we all take for granted; brushing his teeth, shaving, showering and using the toilet. After a while, Kevin could no longer swallow because of muscle weakness in his throat, so he had to be fed through his stomach using a peg tube.

However, throughout all of this he never lost his sense of humour. As a family they could all make light of certain things. For instance, when he took 20 minutes to open an advent calendar and smacked it on the table to get the chocolate out, and then Sandra leaned over and ate it!

That was just the families sense of humour and Kevin found it hilarious, once he stopped swearing that is. 

He loved going to watch Newcastle United with his son, Lee, but because he lost muscle in his eyelids he used to have to hold his eyes open. It became more difficult, he once got arrested for being drunk in a football stadium, even though he'd only had 1 pint. It was before he had a wheelchair and people would assume he was drunk because of his symptoms - not being able to balance properly, his eyes drooping and his slurred speech. However, typically he even had a laugh about that because they once locked him in with the away fans! 

He had to start carrying a hospital letter with him explaining his condition, but sometimes, he was just drunk and blamed his condition!

It was the fact that all 4 of the family shared the same sense of humour that kept them going and Kevin never complained or moaned about his situation.

Just the last few weeks before they lost him was the only time the family seen him down. He was just so weak and tired.  Sandra still gets upset at how low he was at that point because he had never let it get him down before. 

The last years were very difficult. Sandra still had to work because the mortgage and bills still had to be paid.  Kevin still had to be showered, shaved, teeth brushed, dressed and peg fed four times a day. They did have carers come in twice a day but Kevin would only let them do the feeds.  He would only let Sandra do the more personal things. 

Financially, the family were lucky that Kevin had a private civil service pension, but sometimes it worked against them. When they had to make any adaptions, they never received any financial help and insurance for disabled people is either impossible with some or not affordable with others, which is a great strain on the close family who are left behind.

The family lost Kevin two years ago shortly after his 56th birthday.

This is just one families story amongst many others affected by Muscular Dystrophy. Any support you can afford to donate to Muscular Dystrophy UK would be greatly appreciated.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

Thank you for reading this and thank you to Sandra for sharing Kevin's story.

http://www.musculardystrophyuk.org/about-muscle-wasting-conditions/myotonic-dystrophy/