“My thumb cramps turned out to be an incurable disease and I have maybe six months to live”

Alisa Malcom-Hutton first knew something was wrong when she started suffering from thumb spasms, but was later diagnosed with motor neuron disease and now says she may only have months to live

Ailsa Malcom-Hutton before she fell ill
Ailsa Malcom-Hutton before she fell ill

One mother’s thumb spasms turned out to be an incurable disease that could leave her with only a few months to live.

Alisa Maclom-Hutton first knew something was wrong when she started clenching her thumbs and suddenly struggled to style her daughter’s hair.

When she was finally diagnosed with motor neuron disease in 2013, she lost the use of her arm and was forced to quit her job. The Manchester Evening News reported .

The life-limiting degenerative disease affects the sufferer’s ability to walk, speak, eat, and eventually breathe.

There is no cure and life expectancy after diagnosis is only two to five years.







The mother was diagnosed with the devastating disease in 2013
(

Picture:

Ailsa Malcolm Hutton)







She may only have months to live now
(

Picture:

Ailsa Malcolm Hutton)

The 39-year-old, from Davyhulme, Greater Manchester, said: “When the counselor told me I had motor neuron disease (MND) I didn’t even know what it was – just the life expectancy and that I wouldn’t be treated at all.

“Not only that, but I would get a lot worse. I drove home dazed after receiving a brochure about MND and was basically told there was nothing they could do.

“I came home and we had a new boiler put in 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 the most – telling my six-year-old daughter about it while not scaring her.







Ailsa with her boyfriend Dean
(

Picture:

Ailsa Malcolm Hutton)

“Somehow I made it and made a pact with her that I won’t die. That’s what keeps me strong nine years later.”

Ailsa is now unable to walk and cannot use her arms. She can only watch TV by controlling her Xbox with one finger and one thumb.

The mother of a child has attendants 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 for herself.

Ailsa has more than 350 MND symptoms, including chronic fatigue, watery eyes, constant rashes, kidney stones and nausea, and can experience up to 200 of these symptoms a day.






Ailsa knew something was wrong when her thumbs began to cramp

Doctors say she has less than six months to live at any given point – but Ailsa has said she plans to live long enough to see a cure for her devastating illness.

“I have a form that says I have less than six months to live at any given time, but I don’t listen to any of that. I survive just long enough before someone can help me with a cure or the right diagnosis.

“My spirit is still so strong and cannot 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 be staying here.”

Ailsa’s carers are now raising funds for a new wheelchair to help her “gain the freedom and independence she so desperately deserves” and “to make her feel part of society again”.






She is now essentially bedridden

It is hoped that the money will also allow Ailsa to go on holiday with her daughter, which she has not been able to do since Isabella was very young.

In a statement accompanying the online fundraiser, Ailsa’s caregivers said: “All we want is for Ailsa to live a full 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.

“Unfortunately that is not possible at the moment as she is confined to her bed 24 hours a day and cannot enjoy the outdoors, visit places or do the things she loves. We want Ailsa’s life to be full of enrichment and joy because that is what being with her brings us.”

To learn more about the fundraiser, click here .

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https://www.mirror.co.uk/news/uk-news/my-thumb-cramps-turned-out-27209664 "My thumb cramps turned out to be an incurable disease and I have maybe six months to live"

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