A MOTHER has told how she will cherish every moment with her husband and eight-year-old daughter after being diagnosed with incurable Motor Neurone Disease.
Elly West's worst fears were confirmed when doctors told her she had MND.
But, with support from her family and friends, Mrs West, 35, is determined to create the best memories to leave behind for husband Rory and daughter Poppy.
She said: "MND is usually an older person's disease and it's normally found in men. It's not what you expect a 35-year-old woman to get.
"You think you have forever. Now, we have to live for the moment."
Mrs West, a teacher at Thomas Ferens Academy in Orchard Park, north Hull, had been unwell for more than two years, including suffering a frozen shoulder and pancreatitis.
Doctors believed it was a problem with her gall bladder and she had it removed in October.
"They told me in six weeks' time, I'd feel like a new woman and we were so ready for that because I'd been poorly for so long," she said.
But, after six weeks with no improvement, Mrs West went for more tests to rule out conditions such as multiple sclerosis. The results were all negative.
"I thought I had MND long before I saw a neurologist," she said. "It was that bad, I'd already started putting things in Rory's name."
She voiced her fears to her GP and was referred to consultant neurologist Dr Alec Ming.
More tests were ordered but when she went to get her results from Clifton House Medical Centre, Mrs West suffered breathing problems and had to be rushed to Hull Royal Infirmary.
On December 10 after more tests, doctors finally broke the news to Mrs West and her mother Amanda that it was MND, a progressive disease of the nervous system which could eventually rob her of her ability to walk, swallow, talk and breathe.
She said: "I thought that if anyone had to tell my husband this, it should be me so I went into the room to be told with my mum with me. If Rory had been with me, I wouldn't have been strong and I needed to be strong.
"They asked me what I thought I had and I said MND and the doctor told me I was right. I think they expected me to fall apart but, in my head, I was already there."
She asked her husband, who works at Ideal Boilers, to come to the hospital so she could tell him.
"We just looked at each other in the hospital corridor and I didn't have to tell him," she said. "He knew."
Together, the couple have broken the news to Poppy, who is in Year 4 at Croxby Primary in Cottingham.
"We told Poppy the hospital can't do any more for Mummy," said Mrs West. "She has been so brave and I know everyone says this about their children, but she is my world."
Poppy is planning a sponsored swim and a bike ride in the next few months to raise money for Dove House Hospice, which is helping the family.
With no idea how long Mrs West has had MND before her diagnosis, the couple, of east Hull, are unsure of how much time they have left together.
"Normally, they say two to five years but we don't know how long for us because I was already so poorly," said Mrs West.
"What I'm really angry about is that I'm a really independent person and I have always been a fighter. If you get any other illness, at least you get a chance of fighting it.
"But there isn't a chance with this. Once it's there, it's there and there's nothing I can do about it."
With their future uncertain, the couple are treasuring every moment and friends have set up a fundraising page at www.gofundme.com/jhjmb8 so they can create special memories for Poppy with her mum. So far, friends have raised £2,370 of the £3,000 target.
They plan to take Poppy, who loves Prince William, wife Kate and baby Prince George, to London to visit Buckingham Palace and to Scotland, somewhere Poppy has always wanted to go.
"I want to do these things while I'm still mobile," said Mrs West. "We had things booked for the summer holidays but we can't leave things for months now. I can't believe the support we've had, from our family and friends to Poppy's school, the MND nurse Vanessa and the people at Dove House.
"I'm really scared that I get locked-in syndrome and I won't be able to communicate with Rory and Poppy, to tell them how much I love them and how sorry I am for all this.
"If it wasn't for Poppy, I'd have given up. I'm 35 and the thought of losing my mum scares me yet she is only eight years old.
"But I want her to know how much I love her and now, I never wait to say it in case I wake up one day and I can't tell her anymore."
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