Mom’s cramps turned out to be a symptom of an incurable disease

A mother has told that what looked like harmless cramps in her thumbs turned out to be a symptom of an incurable disease. Ailsa Malcolm-Hutton was first diagnosed with motor neuron disease (MND) at age 30 in 2013.

Ailsa, from Davyhulme in Urmston, Greater Manchester, has defied doctors’ diagnoses by continuing to exceed her predicted maximum life expectancy for years – but now may have just six months to live.

The condition is a life-limiting, muscle-consuming disease that affects the patient’s ability to walk, talk, eat, and ultimately breathe. There is currently no cure and life expectancy after diagnosis is only two to five years.

Ailsa told the Manchester Evening News that she first knew something was wrong when she started getting cramps in her thumbs and struggled to do her daughter’s hair for school. By the time she was finally diagnosed, she could no longer use her arm and had to give up her job as a makeup artist.

“When the consultant 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 repaired at all,” said Ailsa, now 39, “Not only this, but I would get a lot worse.

Ailsa before she became unwell

“I drove home in a daze after being given a leaflet 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 out 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 and not terrifying her at the same time. Somehow I did and made a pact with her that I wouldn’t die. That keeps me going nine years later.”

Ailsa can no longer walk and can no longer use her arms. She can only watch TV on her own by operating her Xbox with one finger and one thumb.

The mother-of-one has carers who feed her, give her medicine, change her sanitary pads and wash 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, glowing eyes, constant rashes, kidney stones and nausea and can get up to 200 of these symptoms a day. Doctors say she has less than six months to live at any point, but Ailsa plans to live long enough to find a cure for her devastating illness.

Mom's cramps turned out to be a symptom of an incurable disease
Ailsa with daughter Isabella

She said: “I have a form that says I have less than six months to live at some point, but I don’t listen to that. I survive just long enough until someone can help me with a cure or the correct diagnosis.

“My spirit is still so strong and cannot be broken so easily. My daughter Isabella is beautiful inside and out, so polite, really funny and just lovely to be around – so I’m staying close.”

Ailsa’s caretakers are now raising money for a new wheelchair to give her “the freedom and independence she so much deserves” and to “make her feel part of society again.” It is hoped that the money will also enable Ailsa to take a vacation with her daughter, something she has not been able to do since Isabella was very young.

In a statement about the online fundraiser, Ailsa’s caretakers said: “All we want is for Ailsa to live a fulfilling and happy life. Ailsa is a sweet, caring and devoted friend, daughter and mother, we all love her so much and want to see her.

“Unfortunately, that is not possible now when 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 this is what it brings us to be with her.”

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