As Mother’s Day approaches, MND Scotland recognises the incredible resilience and strength of women, mothers and caregivers who, despite facing their own challenges, maintain a positive outlook on life and continue to be a source of support and hope for their children, families, and loved ones. 

This week, MND Scotland shines a spotlight on Claire Berry, an incredible woman living with motor neuron disease who continues to inspire her three loving children and family through her bravery: “My children are and have always been my ‘why’ and I’ll continue to love, guide and support them as best as I can. If someone had told me five years ago that I would reach my 40th birthday and be here to witness their achievements and important milestones, I would have found that hard to believe. They are all doing well despite the challenges we face and I’m so incredibly proud of them”.   

Before her MND diagnosis, Claire 39, from Larkhall, South Lanarkshire, was a Freelance Makeup Artist, renowned for her self-taught talent and signature looks in bridal, prom and occasion make up in and around her hometown. This career allowed her the flexibility to work around a busy family life and earn a living from her passion. She has always remained upbeat in all aspects of her life and pours her heart into making others feel their best, just like her job once did. 

Despite facing her own challenges, Claire has never lost sight of what it means to be a mother. Her positive attitude, filled with determination, remains an inspiration to her family. “Not every day is good, but you can find good in every day. I’m filled with gratitude for what I have in life and have hope for the future”. 

Claire has three children, Casey, who is 17, and twins Kole and Kayla, who are 15: “Casey is very much like me. She loves all things beauty and helps keep me feeling good about myself. Other family members book in regularly with her too for makeup and hair for special occasions so she’s the one most taking after me. She’s off to University in September to Study Criminology.” 

“Kayla is sporty and into fitness as well as being academic; she has been a goalkeeper in the Celtic Girls Academy since she was 9 years old. Her dream is to play football professionally and represent Scotland at an elite level. Even with a busy training schedule and weekly fixtures, she chips in with chores and helps with my routines.” 

“Kole is also keen when it comes to fitness and recently took up boxing. His favourite subjects at school are Business and Art and hopes to use his creativity to study them further. He is the one who I’m at home with mostly in the evenings and – in-between gaming – making sure I have everything I need while the girls are at work and training. I know he will one day make a great husband because he’s now growing up in a house full of women!”. 

Motor neuron disease (MND) is a rapidly progressing terminal neurological illness, which stops signals from the brain reaching the muscles. This causes muscle weakness and wasting. MND can rob someone of the ability to walk, talk, swallow and breathe. The average life expectancy of someone with MND is just 18 months from diagnosis. There is no cure or meaningful treatments.   

Speaking about MND, Claire said: “There’s a lot of things I’ve lost the ability to do and that brings with it upset and frustration, but I try to focus on what I still manage. You learn to adapt and overcome the daily challenges and find new ways of doing things. Even on the hard days, I’m kept busy and push on to provide the kids with what they need to get through, but I do believe it’s important to show emotions and talking openly about how we’re all feeling as being honest helps us work through the difficulties”. 

Claire was diagnosed with motor neuron disease in August 2019 following a 6-month process of referrals, genetic counselling, blood tests and scans: “After ruling everything else out, it was confirmed that my loss of leg strength and reduced mobility that year was due to the dreaded disease my family fight. I’m the latest of nine relatives, over three generations to have been diagnosed with familial MND. The closest person to me was my dad who passed away in 2000 when I was 14 years old. He was just 43. It’s from growing up surrounded by this fate that I have always been aware of the disease, how it progresses and how destructive it is”. 

Claire added: “Due to our family’s known gene, I was quickly referred to a neurology consultant after speaking to my GP about my concerns. Myself and my relative’s onset all seem to be in our lower limbs, my initial symptom started with a minor limp and within a year I was wheelchair bound. There is something called an ALSFRS-R score which measures the physical functioning in people living with motor neuron disease. My score had dropped significantly in the months it took to be diagnosed”.  

Claire went on to say: “On that day, I left the hospital room knowing my consultant had referred me to a research centre in Sheffield who were trailing a drug specific to treating SOD1. I was eager to take part in anything that would help research and get us closer to finding a cure so just a few months later I was successfully screened to receive my first dose of tofersen as part of Biogen’s global study. Since then, I’ve received gene therapy monthly via lumbar puncture and feel my progression has slowed down greatly, giving me more precious time. I’m so grateful to be a recipient of this life-extending drug and part of it’s success story. In comparison to other family members, my journey and that of future generations is and will be one of hope”. 

Dr. Jane Haley MBE, Director of Research for MND Scotland, said: “For families like Claire’s, who have a genetic change that can lead to MND, research has led to progress. Some of the genes involved have now been identified and this has led to the development of treatments that can target them. One of these is tofersen, which is specifically designed to reduce levels of the abnormal SOD1 protein. The SoD1 population of MND is around 2-4% of people living with the disease and is a positive move in the right direction”. 

“Thanks to people like Claire, who took part in the clinical trial, tofersen has been approved for use in the USA and in Europe. We hope this will also be approved in the UK and become the first new treatment for MND in more than 30 years.”

Despite living with a life-limiting illness which often means battling physical limitations and emotional hardships, she approaches each day with positivity – a testament to her love for her children. 

Claire said: “In the beginning, it’s daunting as you get your affairs in order, put plans in place and have difficult conversations – ones you wouldn’t imagine having in your 30s”. 

“My kids were still young at the time I was diagnosed so the language we used in the beginning took that into consideration while we were still truthful about my ill health. We have open conversations, and I remind them often about how blessed we are that our journey now is very different from others and what they endure. Having the role of young carers has taught them valuable life skills. They have shown resilience and emotional maturity through their caring responsibilities.  

“There’s no doubt they have all coped better knowing that I was involved in the trial for a new treatment. There are now options if and when they choose to have families of their own and hope for their futures with more breakthroughs to come”. 

Mother’s Day is a reminder to celebrate and honour the strength, love, and support from mothers, women and caregivers, including those no longer with us, who help shape the lives of their children and families.  

Claire added: “It takes a village when raising kids and we are surrounded by supportive women. They all take it in turn to make sure we are all well looked after. This includes getting them organised for school, training and work. Helping with housework, preparing homemade meals and allowing me to travel to Sheffield monthly for treatment with peace of mind”. 

MND Scotland is the only charity in Scotland dedicated to directly supporting people with MND, their families and friends. Claire accessed support from MND Scotland to help with her MND diagnosis: “A weight is lifted when you realise you are never on your own. From initially meeting your specialist nurse to MND Scotland providing benefit advice to advocating for urgency when requesting necessary adaptions to your home, their support is invaluable. I’ve been able to apply for grants to help with the cost of custom equipment and fees that come along with making your home fit for purpose”. 

With the support of MND Scotland Claire and her family have also made great memories and spent quality time together with the help of a ‘make time count’ grant each year: “We’ve enjoyed holidays abroad to Lanzarote, Cyprus and Majorca as well as adventure days out and staycations. There’s no way I could organise it all or be able to travel without my mum and we make sure the break away has something for all of us. The last hotel we stayed in had a pool hoist to make it easier for me to get in and out the water, so I wasn’t missing out”. 

Angela Harris, Director of Support Development for MND Scotland, said: “We would like to extend our heartfelt thanks to Claire for sharing her story so honestly and openly.  Her courage helps raise awareness about MND and inspires others to understand the challenges faced by those affected by the disease.”

“Motor neuron disease (MND) affects every individual differently, symptoms may progress at different rates, and life expectancy can also vary depending on the type of MND. 

“At MND Scotland, we are committed to ensuring that no one faces this journey alone. We offer a range of support services, including well-being, emotional and bereavement support, and financial and advocacy advice for families navigating an MND diagnosis.”  

“Claire’s story is truly inspiring, and we are glad that she received support from our team. We encourage other families affected by MND to reach out and learn more about how we can support them”. 

Claire continued: “My main focus has always been my children and making sure they have a different journey from me. I knew when I was diagnosed that I wanted to put my name forward for anything that could help. We need to keep positive and hopefully get closer to understanding the complexity of MND.”  

“I find comfort in hearing good news stories, knowing there’s progress being made across the globe in understanding the complexity of MND. I hope my story can lift someone’s spirits too”. 

MND Scotland would like to thank Claire for her bravely in sharing her story and honour mothers and women like her who continue to make a difference in the lives of families whilst navigating difficult health challenges.  

For more information about MND Scotland or how we can support you or your family, please visit: www.mndscotland.org.uk, email: support@mndscotland.org.uk, or call: 0141 332 3903.