Charity Champion or Volunteer of the Year nominee – Marc Cotterill
Charity Champion or Volunteer of the Year nominee – Marc Cotterill
A man whose lung function once dropped to just 29% because of Cystic Fibrosis faced an endurance challenge of a lifetime to raise worldwide awareness of the drug that changed his life.
Marc Cotterill from Cheadle was born with CF, a progressive disease that left him feeling like he was ‘suffocating in his own body’.
The 41-year-old’s condition was so severe he suffered a collapsed lung and was facing vascular surgery and longer-term the prospect of a lung transplant until, during lockdown, he was granted access to a lifesaving drug called Kaftrio, which is now available through the NHS.
Marc’s lung function is now back up to 76% which means he can comfortably run for 5k and hit the gym harder than he has in years.
In June the business architect teamed up with four friends (Craig Stanway from Stone, Ryan Talbot from Biddulph and Pete Oakden from Edinburgh) to take part in an 80-mile endurance challenge, paddleboarding across shark-infested waters from the Bahamas to the Florida mainland.
Marc has so far raised around £18,500 for CF charities but, most importantly for him, raised awareness of the drug that changed his life and the health inequalities that prevent it from being available for all.
Marc said: “I was used to experiencing frequent chest infections and relied heavily on IV antibiotics every few months. This treatment caused major vascular issues, making IV access a nightmare and I was completely aware I was running out of options.
“That was until I got the call that confirmed I had been granted access to Kaftrio. It is a miracle drug, I took my first dose in my car at 11am on March 3, 2020 and the transformation happened overnight.
“The next day, I woke with no cough for the first time in over 20 years. I had become used to waking and coughing so violently I would begin each day exhausted, with sore lungs and a severe headache. After a couple of days, I was getting up at 6am to work out in the garden before work or my other CF treatments. Previously I would have needed to do at least an hour of treatments before I could even attempt to face the day.
“Before Kaftrio, CF was working against me, impacting every part of my body, but that has now been thrown into reverse. Because my lungs are working much more efficiently, my health and quality of life have dramatically improved.
“My airways are no longer clogged up with rubbish so I’m not breathless and my appetite has gone through the roof. The increase in food leads to more energy, which means I can work out like never before. That’s why my amazing mates and I jumped at the chance to embark on this challenge.
“It was an opportunity to demonstrate the power of Kaftrio and I feel it is my duty to do what I can to help others who currently have no hope of gaining access to this drug – without it, many people with CF all over the world will die – that’s the reality.”
Without Kaftrio Marc knows that his life expectancy would be considerably shorter. He has documented his experiences on social media and has regularly received desperate messages from people with cystic fibrosis who live in poorer countries and have no hope of accessing the drug.
Marc has been nominated as a Charity Champion or Volunteer of the Year in the Your Heroes Awards by Su Wright-Lewis.
Su said: “Marc is a beacon of hope and positivity for CF sufferers and their families and his inspirational speaking is eye-opening, emotional and educational. His tireless campaign deserves recognition which will encourage others to embody his motto of ‘do something epic.”