I JUST WANT TO LIVE FOR MY LITTLE GIRL
Emma has written birthday cards for her daughter and bought gifts for any grandchildren. She knows MND could take her life any time but is adamant...
HEN Emma Moss was diagnosed with motor neurone disease three years ago she was determined to see her 16-month-old daughter’s first day at school. She knew the odds were against her as more than half of MND sufferers die within two years and did not allow herself to think she had made it until the night before the big day.
So it was “incredibly emotional” for Emma to see her daughter Veryan, now four, start primary school this month.
She said: “People were saying to me, ‘It is so close’, but life with MND is precarious so it really wasn’t until the night before she started school that I thought, ‘This is it, I have made it’.
“I was happy for her to have this normality in her life and to begin this journey that I loved – I loved going to school.
“I wanted her to get to school and have lots of opportunities, so I felt incredibly emotional, very proud of her and excited to begin this next part of our lives together.”
This came after the former deputy head teacher celebrated her 40th birthday on Boxing Day, another landmark occasion she feared she would never see.
Emma said: “I was diagnosed when I was 37 so I did think, ‘Am I going to be forever in my 30s?will I make it to 40?’
“When I did that felt huge.
“Veryan’s fifth birthday in January will be the next big thing, as when I was diagnosed that was the number I really wasn’t sure about.
“So I am positively picturing a large balloon with the number five on it, whichever cake she chooses and really working towards that as the next milestone.”
Emma has campaigned for more funding for research to find a cure for MND since her diagnosis and writes a popular blog, Mummy with MND, on Facebook.
She is backing a Sunday Express crusade with the MND Association and other leading charities for £50million of Government funding over five years for targeted research to find effective treatments for the terminal condition.
Sufferers are currently given equipment to help them in their day to day lives, but there is only one drug that has a limited effect on slowing down the disease. The English literature teacher said: “If I could I would tell Boris Johnson, Rishi Sunak and Sajid Javid that the time is now, that it isn’t acceptable for us to wait any longer to further research into a disease which for far too long has been ignored.
“The best minds in UK science are working to find effective treatments and a cure for this disease, but without enough funding it will be impossible.
“So we either want to do this or we don’t, and if we don’t, why not?”
She added: “It seems ludicrous to me when I say it out loud that there is no treatment for MND. It is not incurable, it is just under-funded.”
Emma, from Northampton, had started showing symptoms of the disease – which attacks the nerves that control movement so muscles no longer work – just months after giving birth.
She said: “We tried for a long time for a baby and eventually we had to have IVF.
“I always knew she was going to be a girl so when she came along in early 2017 it was beautiful. I had everything I had wanted for so long. It seemed doubly cruel to then get MND shortly after this.”
After a year of symptoms she initially dismissed as being the result of giving birth by caesarian section – such as tiredness and weakness in her hands – Emma went for a test for carpal tunnel syndrome on her wrist.
She said: “When the doctor asked me, ‘Have you had any trouble breathing or swallowing?’, it was like time stood still. I put everything together and knew it was MND. I had gone expecting to have some tests on my wrist and came out clear in the knowledge I was terminally ill.
“I can remember the walk down the corridor, I can remember exactly where my car was parked. I got into the car and just screamed and screamed and screamed. I just did not know what to do.”
MMA added: “My daughter was 16 months old at the time. I had had symptoms for a year by that point and they had got steadily worse, so I do feel I never had the opportunity to be the mother I should have been, or wanted to be.
“I did not ask how long I had and made it very clear I didn’t want to know.
“I knew what the statistics were but I made it very clear to my team that I only wanted to focus on the good.
“I wanted us all to have a positive
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outlook and did not want to be talking about end of life or end stages.
“I only wanted to talk about anything we could do to prolong my life at all costs.”
With this positive outlook Emma is determined to be there for her daughter, saying: “I have tried to prepare for lots of milestones in her life. Not with the acceptance that I won’t be there, because I don’t accept it. I have to think that I will still be here because that is what keeps me going.
“I have written cards for birthdays and weddings, the first home, passing her driving test. I have prepared all sorts of things, even gifts for my grandchildren that are decades away I would think.
“Because if I am not there I want her to know I thought about these times and celebrating with her, and that I tried to make sure somehow a part of me is there celebrating with her, whether through a gift I have prepared and put away, or some words I have written. Nothing is more important in my life than being her mum.”
And for this reason she will continue to fight against MND: “I just need to be alive. I will deal with whatever this throws at me, every physical incapacity, every indignity, every pain, in order to be alive and be a part ofveryan’s life.”
Her husband Terry, 38, was a fitness instructor but had to give up his job to become a full-time carer for Emma.
SHE SAID: “We both struggle with the thought of how our lives could have been without MND. If for one moment I flip into a daydream for what life would be like if I wasn’t ill, and if I didn’t need 24-hour care, it is so painful.
“I can bring an image to mind for a second. Perhaps it is me chasing Veryan up the stairs to get her pyjamas on, or putting her in the back of the car to go to a swimming lesson, but I can only bear it for a second.
“That is the hardest thing, to think of the life stolen from us by MND.”