A mum has told how what appeared to be innocent cramps in her thumbs turned out to be a symptom of an incurable disease. Ailsa Malcolm-Hutton was first diagnosed with motor neurone disease (MND) at the age of 30 back in 2013.
Ailsa, from Davyhulme in Urmston, Greater Manchester, has defied doctors' diagnoses by continuing to surpass her predicted maximum life expectancy for years - but might now have just six months left to live.
The condition is a life-limiting, muscle-wasting disease which affects the sufferer’s ability to walk, talk, eat and eventually breathe. There is currently no cure and life expectancy after diagnosis is just two to five years.
Ailsa told the Manchester Evening News she first knew something was wrong when she began experiencing cramps in her thumbs and struggled to do her daughter’s hair for school. By the time she was eventually diagnosed, she could no longer use her arm and was forced to give up her job as a makeup artist.
“When the consultant told me I had motor neurone disease (MND) I didn’t even know what it was – only the life expectancy and that I wouldn’t get fixed at all,” Ailsa, now 39, said . “Not only this, but I was going to get much worse.
“I drove home in a daze after being given a leaflet on MND and was basically told there was nothing they could do. I arrived home and we were having a new boiler fitted and all the gas men were there and I just went straight outside and sat in the rain and cried. I think I stayed there all night.
“Then came the moment I dreaded most – telling my six-year-old daughter and not terrifying her at the same time. Somehow, I did it and made a pact with her that I wasn’t going to die. That keeps me strong nine years later.”
Ailsa is now unable to walk and has lost the use of her arms. She can only watch TV independently by using one finger and one thumb to control her Xbox.
The mum-of-one has carers who feed her, give her medication, change her pads and bathe her. They also act as her voice when she feels too weak to speak herself.
Ailsa has more than 350 MND symptoms, including chronic fatigue, glitching eyes, constant rashes, kidney stones and nausea and can suffer up to 200 of these symptoms per day. Doctors say she has less than six months to live at any given time – but Ailsa plans to live long enough to see a cure for her devastating disease.
She said: “I have a form that says I have under six months to live at any given time, however I don’t listen to all that. I just survive long enough until someone can help fix me with a cure or the correct diagnosis.
“My spirit is still so strong and can’t be broken that easily. My daughter Isabella is stunning inside and out, so polite, really funny and just lovely to be around - so I will stay around.”
Ailsa’s carers are now fundraising for a new wheelchair to help give her the “freedom and independency she so desperately deserves” and to “make her feel like a part of society again”. It’s hoped the money will also allow Ailsa to go on holiday with her daughter, something she has not been able to do since Isabella was very young.
In a statement on the online fundraiser, Ailsa’s carers said: “All we want is for Ailsa to be able to lead a fulfilling and happy life. Ailsa is a kind, caring and devoted friend, daughter and mother, we all love her so much and want to see her happy.
“Sadly that isn’t possible right now when she is confined to her bed 24hrs a day and can’t enjoy the outdoors, visit places or do the things she loves. We want Ailsa’s life to be full of enrichment and joy as this is what being with her brings to us.”
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