Cystic Fibrosis Awareness Month: The Lafferty’s Story
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
Cystic fibrosis is a genetic condition that causes a build-up of mucus in the lungs and digestive system. CF affects more than 10,000 people in the UK, and to date, there is no cure. Treatments are available for those suffering with the disease to ease symptoms, but life expectancy is shortened.
Nicole Lafferty was diagnosed with cystic fibrosis aged just 2 years old, after suffering difficulties with a chesty cough that wouldn’t disappear. Her diagnosis at such a young age resulted in much of Nicole’s childhood, and early adulthood spent in and out of hospital wards as she was given the medication and treatment she required.
On 31 December 2017, Nicole was admitted to Glasgow’s Queen Elizabeth University Hospital (QEUH), and this was to be her last admission. Nicole tragically passed away on 1 February 2018 after her 22-year long fight against cystic fibrosis, leaving a mother, father, and younger sister devastated.
In the early days, the Lafferty family struggled greatly to come to terms with their daughter’s diagnosis, as they knew very little about what cystic fibrosis was, and what impact it could have on each of their lives.
The family were put in touch with UK-wide charity the Cystic Fibrosis Trust, and together, left no stone unturned, learning everything they could about the disease.
“We both ran the salon. I wanted her to feel she could achieve something, and it was a time in her life that she loved, and I now cherish.”-Mandy Lafferty
When Nicole was five, her sister Megan was born, but as time went on, Nicole needed increasingly more care, so mother Mandy trained herself to be not only an expert on the disease, but also her full-time carer.
“I could never really hold down a job as Nicole needed so much care, and when she had to stay in hospital, I would never leave her there alone. I always stayed with her. We were lucky that my husband had a good job, and were able to manage with just one wage coming in.”
The family recall receiving very little support throughout Nicole’s illness, but being such a strong family, were able to manage the best they could.
With Nicole and Mandy spending long periods at the hospital, the strain on Nicole and her family began to take its toll, so Mandy decided to learn how to take care of Nicole’s intravenous drips to reduce the amount of time spent away from home as much as possible.
“I would say it was very difficult for both girls growing up. I suppose you could say my youngest daughter Megan never got the best of me, as my main concern was Nicole. When I was at the hospital with Nicole, Megan would stay at home with her dad, and I think Nicole felt guilty about this too, which hurts me.”
Mandy described how the symptoms of cystic fibrosis can lead patients leading a lonely and restricted life. For Nicole, the countless hospital stays resulted in her gradually having less and less visitors and losing contact with friends, making her feel as if she was isolated from the world.
However, in 2013, Mandy opened a beauty salon in Coatbridge, and sent Nicole on various beauty courses.
“We both ran the salon. I wanted her to feel she could achieve something, and it was a time in her life that she loved, and I now cherish.”
Mandy also turned her attention to helping others in the ward. She began to ask for donations of snacks and treats for the other patients, but due to concerns of cross-contamination, she had to rethink her plan. Mandy then decided to fundraise, and was able to buy the young people in the ward vouchers for the hospital’s shops, WHSmith and Marks & Spencer.
“It’s very expensive when you stay in hospital, and I noticed most of the cystic fibrosis patients don’t like the food provided, so they buy in shopping and order takeaways etc.
“Also, as Nicole’s weight continued to fall, her coccyx bone began to protrude and gave her great pain. We were unable to get her any sort of pad to ease the pain which I found quite shocking, so I now offer special pads to any patient that needs them too.”
In January, just before Nicole’s death, Mandy set up The Nicole Lafferty Foundation, which is aimed at helping young people who suffer with cystic fibrosis at Glasgow’s QEUH.
“She was my best friend and we spent most of our time together especially the last couple of years of her life.
“I am hoping to keep the charity going for as long as I can, and hope that more people will get involved to help us out. I have lots of other ideas for the charity which I’m hoping to be able to start with enough money.
“The grief is getting worse as time goes on, but I know I need to carry on raising money for others with cystic fibrosis.”
Mandy’s daughter Megan and her friends are also getting involved in the fund-raising.
Megan said: “It’s definitely difficult for the person who has cystic fibrosis, but it was horrible for the family too. Having to see my sister go through so much pain all the time was awful. Not being able to breathe after going up and down the stairs was even difficult [for her].
“A couple of my sister’s really close friends and I decided we wanted to start going out and doing things to raise money and awareness for my mum’s charity, and the disease cystic fibrosis, as it doesn’t seem to be the most well-known illness. It’s been hands on, but I’m hoping to keep getting out there and raising as much awareness as possible!”
In April, the group made t-shirts and climbed Tinto Hill near Lanark. Megan set up a Just Giving page and made sponsor sheets, and raised more than £200. Herself and some of Nicole’s friends will also be taking part in the Edinburgh Marathon Festival on 26 May to help her mum raise funds.
In memory of their daughter Nicole, the Lafferty family hope to continue to raise money and awareness in Scotland for cystic fibrosis. For more information on the Nicole Lafferty Foundation and their up and coming fundraisers click here.