Gemma Edwards had been feeling ill for almost a year with slurred speech and extreme tiredness before she was finally diagnosed with motor neurone disease.
Then, over time, other symptoms started to appear. She lost her voice and energy, her ability to swallow food and drink and her independence until she finally passed away.
First experience
It was the first experience Jen Marchant had of the disease, which has no known cure, and it’s why she has nominated the Motor Neurone Disease Association as one of our chosen charities for 2020.
Said Jen: “She had been ill for some time before she finally got the diagnosis, but unfortunately she went downhill quite quickly after that and died.
Awful disease
“It’s an awful disease because you can see people you love literally wasting away in front of you.
Once she had her diagnosis the association were brilliant with her, looking after her and providing a range of equipment to help her keep her independence as long as possible.
“It was really tough on her family – she had two children and a grandchild she saw but could never hold. The association were brilliant and supportive throughout.”
Very generous donation
Receiving our cheque for £440 Alun Owen, chairman of the Merseyside branch of the association, said: “Thank you so much for this very generous donation. Raising funds under the restrictions of the pandemic has been difficult.
“As a charity we believe it could cost us as much as a third of our £17 million a year income from donations and events so tremendous gifts like this are very important.
Daily requests for help
“We get requests for help daily. Recently we were able to help fund a special £3,000 feeding machine for a man who could no longer feed himself, but we also supply less expensive things like a £25 draw sheet which helps to move a bed-bound patient more easily.
“You can rest assured that this brilliant donation will be put to very good use,” he added.
Incurable
Motor neurone disease is an incurable condition which slowly paralyses the muscles throughout the body leaving people unable to do everyday tasks like walking, talking and swallowing.
It also affects areas of the brain involving thinking, language, behaviour and personality – a condition the doctors call cognitive change.
