Natalie, from East Kilbride, retreated in January 2021 when she was given the devastating news, only telling very close friends and family about her diagnosis.
Now, determined to raise awareness and help other young people like her, she is ready to share her story on the week of MND Scotland’s 40th Anniversary (23rd June), and is raising funds for the charity to help fund the search for a cure.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. There is no cure or effective treatment.
An Online Business Travel Support Consultant, Natalie said: “I was told I had MND on 13 January. I was in complete shock and to be honest didn’t really know much about MND. I thought only older people got it. The next five days was spent researching until my MND nurse came to see me.
“My mum was being strong, but I knew her heart was breaking. This was difficult for me to see. My dad was also in shock, and it was the worst phone call I had to make as he lives in Aberdeen, and I could not go and see him.
“I just went into shutdown mode and was quiet. I decided with my mum that we would only tell our very close friends and immediate family until we fully understood what was going on. And I really cannot thank them enough for supporting us through to this day.”
In the years leading up to her diagnosis, Natalie noticed things were wrong, but initially put it down to dancing injuries. Natalie began competitively dancing in Cheer, Pom and Hip-Hop from the age of seven years old, and later musical theatre at 16 which involved competing in Disneyland Paris, while she continued to practice ballet, tap, modern, disco and majorettes.
Sadly, in 2017 she had to give up dancing competitively both in her theatre school and cheer team because she could no longer keep up physically, due to the early signs of MND.
Natalie said: “At around 15 years old I wasn’t as strong at dancing anymore. I was having pain with my hip and legs and constantly getting injured. I just put that down to me being clumsy.
“When I was 17, I retired from competitive dancing as I could no longer keep up with the training and standard required for competitive dance. As I just loved my dancing, I started participating in an amateur dramatic club which allowed me to keep doing what I loved and be on stage.
“In August 2019, I had my tendon which crosses my hip operated on (known as clicking hip) as I had been having problems for several years. I was recovering ok, but then in the December, I fainted while unwell and unfortunately ended up in hospital having damaged the tendon they had repaired. The doctors noted the weakness in my feet and legs, along with lack of sensation and made an urgent referral to Neurology. Covid hit, and as we all know, hospital appointments were cancelled, so the operation to repair my tendon was delayed.”
Nine months later, Natalie was finally admitted to the Queen Elizabeth University Hospital for three weeks of tests, which would have to be reassessed again four months later, before a diagnosis could be given.
Since her diagnosis in January 2021, Natalie has decided to fight back against MND with humour and a positive attitude and has leaned on friends and family to support her as her symptoms have progressed.
She said: “I had no idea really what MND was or that there were different strains. I immediately thought I had a short life expectancy, but was told my symptoms were pointing to the strain called progressive muscular atrophy, a more slowly progressing version of the disease.
“I take the view that I am one of the lucky ones and not everyone is as lucky as me. My legs continue to weaken, and I have absolutely no feeling in my feet. I will end up in a wheelchair full-time, when, I do not know, but I am trying my best with my physio and aids to keep my legs moving as much as possible.
“I have always been taught to try and have a positive mindset. And this gear immediately stepped in. It was not till about three weeks after my diagnosis I cried, and I did not stop. I have good days and bad days. And I am scared. I try to attack this with humour.
“I have a few very close friends and they have been an absolute rock to me. They have cried with me and laughed with me, and I know they will always be there with me through this. The saying, friends are your chosen family, is really what I believe.
“The most mentally challenging thing for me is going from a dancer to this. Not being a normal 21-year-old that can just go out with my friends is really hard too. I take each day as it comes and remain positive.
“I want to continue being as independent as possible, which means trying to lead a normal life with working, seeing friends and going on holiday. I hope there is a cure found which helps me.”
In May, Natalie took part in MND Scotland’s virtual Fun Run to raise funds for the charity and use her fundraising drive to tell more people about her diagnosis.
She said, “I did the MND Scotland’s Fun Run as my coming out story. I posted my JustGiving page on Facebook and let the information ripple through. The support has been amazing, and I was so pleased with the amount I raised. I started with a target of £100 and have raised over £2,400.
“I was unable to walk, never mind run , the 5km distance set out, but I used my wheelchair and was able to walk 10 to 20 metres every so often with my aids. At the end, my friend and her mum met me with flowers, and when I got home two of my mums’ best friends had decorated the outside of our house with a balloon arch. I was so emotional.
“I want the money that people donated to go towards supporting families like mine and for medical research for this horrible disease. MND Scotland has already helped me with benefits advice and a riser recliner, and I know they are just on the other end of the phone if I need them.
“This is just the start of my fundraising campaign and I want to continue to raise awareness so more people know MND can affect younger people too. I also want to be there to help any other younger people that get the same diagnosis as me and be able to share how I deal with my diagnosis.”
Iain McWhirter, MND Scotland’s Interim Chief Executive, said: “I want to thank Natalie for bravely sharing her diagnosis with the world. Raising awareness to help other young people going through this terrible diagnosis is a true testament to Natalie’s determination to fight back against MND.
“This week we are celebrating MND Scotland’s 40th anniversary and the incredible things achieved in that time. 40 years ago there was no care, support or treatment for people with MND in Scotland.
“Today, our team delivers essential support services to hundreds of families across the country, like Natalie’s. Together, we have created real change at a political level, ensuring people with MND have the right to communication aids, and are fast-tracked for certain benefits. Last year, we invested £1.5 million into launching the biggest MND clinical drug trial in a generation. This means now almost every person in Scotland with MND can take part in a drug trial to find treatments to slow, stop, or reverse the progression of, MND.
“But we’re not done fighting yet. There is still so much to do, and we simply cannot do it without amazing supporters like Natalie. We will be here to support her and her family, every step of the way.”