Emma Moss's world was turned upside down when she became gravely ill. Support from the ASCL Benevolent Fund has helped Emma and her family deal with the practical and personal fall-out ever since.

A friend in need

Sixteen months ago, life was looking good for Emma from Northampton. She was the vice principal of a large secondary school – a job she loved and had longed for – and was the proud mother of a young daughter after nine years of trying for a family.

But a devastating diagnosis changed everything when she consulted doctors about problems with a muscle in her hand. She thought it was probably a case of carpal tunnel syndrome.

“A skilled technician seemed to know it was Motor Neurone Disease (MND) straightaway but did not immediately say anything,” she remembers.

“He had detected concerning results in all four limbs and then he asked if I had had trouble swallowing. That was it. I started to cry and became inconsolable as the previous 12 months of symptoms were now understandable.

“After a few days of tears, with everyone around me telling me that I didn’t know for sure, we headed for Cornwall, a place we love. On my return we were told that it was Motor Neurone Disease.”

Emma had actually had MND for at least a year. Her muscles had been twitching oddly and the walk to her office had become increasingly difficult; her doctor initially put her weakness down to a vitamin D deficiency and assured her she’d recover in due course.

“On reflection, I wish he had detected the signs of MND earlier as I was still quite well and could have travelled and fulfilled some bucket-list stuff that would be impossible now,” says Emma.

“Instead, I was signed off work with stress. I left work for the Easter holidays in April 2018, fully expecting to return but never did. It was during those holidays that I found out that I had MND and my world crumbled.

“I certainly didn’t ever envisage my career ending this way at the age of 38. I always thought I’d consider a headship one day and aim to retire at 60.”

Despite the curtailment of her career and the drastic effects the disease has had on her family life, Emma is determined to make the best out of her situation.

“I can no longer walk and rely on my power chair and I wear a ventilator for 18–20 hours a day because my diaphragm is weak.

Doing everyday things takes longer and involves a lot of hard work from my husband, Terry, who is now my full-time carer.

“The hardest part is not being able to parent my daughter, Veryan, independently. I wanted to be an incredible mother – I think I still am – but not the mother I wanted to be. It’s heartbreaking to watch others do things with her that I can’t. All I ever wanted was to be a mum and a part of that has been taken from me.”

Fantastic support

Emma received invaluable support from ASCL’s Benevolent Fund (ABF), which has helped the family to make much-needed changes to their home including the installation of a wet room and a lift that enables Emma to go upstairs in her wheelchair.

“The last 12 months have been unbearable at times and we found out that because we were not in receipt of state benefits, all our adaptations would have to be self-funded. As a result, the fund has been a blessing and has enabled me to remain part of my family.

“I get to go up to bed like any normal mother and be upstairs if my daughter wakes in the night. I can sleep in comfort because the specialised bed ABF helped to purchase can be adjusted throughout the night.

“I dread to think how I would be coping without the adaptations. I didn’t know anything about the benevolent fund when I joined ASCL and I hate to think of people out there struggling who may also be able to apply for help from the fund.”

Long-held ambition

Emma is slowly coming to terms with the loss of her teaching career.

“I miss the person I was when I was working and I miss the problem-solving, the pace of the place. My colleagues were wonderful; I’ve never worked with such battle-bruised staff who just would not give up. We laughed a lot, mainly because we had to.”

Emma began her career in 2004, fulfilling a long-held ambition to be a teacher.

“My own teachers were such a profound influence in my life. Margaret Evans and Douglas Bean from my middle school in Bradford were like parents to me. Anna MacDonald and Mark Thompson guided me through upper school with endless patience, often frustration and very welcome support,” she recalls.

“My upbringing was unconventional in some ways and these people were there for me. I always wanted to do the same for someone else and I don’t know if I did. I’ve loved so many of the classes I’ve taught although I call one class of boys from Samuel Whitbread Community College the ‘class of my career’; it never felt like work with them,” says Emma, who is determined to make the most of her family life.

“I love to sit and overlook the beach at Looe Harbour and watch Terry and Veryan play in the sand. I hope to be doing it for years and years. Watching is fine – I just need to be here.”

Emma remembers that at the time of her diagnosis, she was still breastfeeding her daughter and she worried that she would have to stop because of the harsh drugs and treatment protocol involved.

“As it turned out, of course, there is no treatment and there is no cure. People with MND just wait and live the best life they can, and the timeframe is unknown. Over 50% of patients die within two years of diagnosis and over two-thirds of patients die within three years.

“MND shuts down your body. It has to be stopped. People also think it’s rare but there are over 125 people in my county who have the disease. A person’s life-time risk of developing Motor Neurone Disease is 1/300!

“I would urge everyone to, please, consider the Motor Neurone Disease Association (MNDA) as a beneficiary of your next charity event.”

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I certainly didn’t ever envisage my career ending this way at the age of 38. I always thought I’d consider a headship one day and aim to retire at 60.

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ASCL Benevolent Fund

If you know someone who may benefit from the fund or if you think you may benefit yourself, please call 0116 2991122 or find out more online www.ascl.org.uk/benevolentfund

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