Help me to defeat this cruel disease

Then she was struck down with Multiple Sclerosis and her life and that of her family were changed forever.

Alison was just 29 when primary progressive MS was diagnosed. For 13 years, her family had to watch as she slowly lost the use of her body while her mind stayed active, until she eventually died aged 42.

Her mum, Christine Matthews from Golcar, is now launching a campaign to try to raise awareness of primary progressive MS and also money for research into the devastating condition.

"How many other terminal illnesses take 13 years to claim the sufferer?" says Mrs Matthews.

"To watch your bright, intelligent daughter lose every vestige of independence and movement is heartbreaking, as is arranging the funeral."

There are three types of MS – remitting, relapsing; secondary progressive and primary progressive.

Mrs Matthews says little is publicised about the latter because the outcome is so dire. "Once this illness takes hold there is only one outcome – death at a fairly young age. This fact is not generally known to the public. Neither we, her parents, nor her husband were told at the outset which strain Alison had," says Mrs Matthews.

"I and many others feel this is unfair and tries to deny the existence of my daughter's and thousands of others suffering. Therefore the public generally think this is an illness which is not so serious."

For the last five years of Alison's life all her medication and food went through a peg in her stomach.

"Imagine only tasting tiny amounts of food and liquid for five years," says her devastated mother.

"She lived in a straitjacket with a brain. As she was an English Literature teacher, being unable to see very well was particularly hard for her. We read to her instead. She could hear and understand everything that was said to her and loved to be in company, to listen to conversation even though she couldn't join in.

"She could also laugh, which she did readily. I think I could laugh if I were in similar circumstances."

Towards the end conversations with Alison had to be structured so that she could answer by blinking for "yes" or move her head from side to side for "no".

She could only stay up for four hours a day; the rest of the time was spent in bed.

Alison died in 2008 and The Alison Dobson Star Fund was set up to raise money for research at Cambridge University through the MS Society, which aims to repair the myelin which is destroyed in MS.

But Mrs Matthews says she needs help in trying to organise fundraising events.

"I would like to join with someone who is an expert at organising fundraising, as I am just one desolate mother who is desperate to move research along as it seems painfully slow mainly through lack of funding."

Anyone who thinks they can help should email gerald. [email protected].

n Donations can be made to the Alison Dobson Star Fund c/o the MS Society, Freepost Lon 12519, London, NW2 2YR.