Every day of the last ten years has been a blessing for Sophie Clarke.
She was just 17 when she became one of Britain’s youngest double-lung transplant recipients after doctors gave her just two months to live.
So, to mark a decade she thought she might never see, Sophie is now challenging herself to ten charity fundraisers – to raise £10,000 for the hospital that saved her life.
Sophie, now 26, says: “I have been incredibly lucky – I have had friends who haven’t survived lung transplants. I am doing this to try and help people going through what we have been through.
“I have a new chance at life – and I want to make the most of it.”
At just three months old, Sophie, of Tunbridge Wells in Kent, was diagnosed with cystic fibrosis (CF), a genetic disorder which affects mostly the lungs, along with the pancreas, liver, kidneys, and intestine.
Sophie suffered from breathing difficulties and frequent lung infections which caused her to cough up mucus.
Her childhood consisted of daily physiotherapy, dozens of pills and intravenous antibiotics.
Her condition gradually worsened over time and, by 16 years old, Sophie was wheelchair bound and suffering from debilitating chest infections every month which left her needing regular hospital treatment.
Although CF is a life-limiting condition, most sufferers are expected to live over the age of 40.
In healthy lungs, there is a thin layer of mucus that helps the body expel dirt and bacteria.
But for those with CF, this mucus is much thicker and clogs the lungs.
And the damage to Sophie’s lungs was so severe, doctors gave her just two months to live.
She says: “My lung capacity was at just 15% -which is terrifying when you think that 100% is considered normal. I needed round-the-clock help just to breathe. My future was looking very bleak.
“When I was 14, I started to get really severe chest infections, which left me with serious, permanent damage in my lungs.
“Eventually, things got more and more severe and there was less and less I could do and eventually I was using an oxygen pump 24/7.”
Sophie was transferred to Harefield Hospital, in Uxbridge, which specialises in heart and lung care, following a consultation at King’s College Hospital in London.
After she agreed to the prospect of a lung transplant, she was given the green light for the operation following a three-day assessment.
But it was an agonising four months before she received the phone call to say she had a match, during which time her condition significantly worsened.She remembers: “After three false calls, where me and my family had to rush to my transplant hospital clinging to the hope I may have the operation, I was turned down and had to go back home still sick, and becoming desperate.
“At this point I was in a wheelchair permanently, struggling to walk even the smallest distance and needed constant assistance to get out of bed, get dressed and washed. I was not only dependent on my family to do everything for me, but also used a non-invasive ventilator to force air into my lungs, as I was struggling to do that. Everything was looking very dark and frightening for me and my family.”
But finally, at 2.30am on a Friday morning in 2012, doctors told her to go straight to hospital for the operation – and this time it wasn’t a false call.
She says: “I consider myself very lucky to have waited only four months but I had many friends who waited longer and even more who died on the list.”
Since the 10-day operation on February 29, Sophie, who works as an assistant manager at L’Occitane in Tunbridge Wells, has always regarded 29 as her lucky number – so was amazed to discover a year later that her organ donor was a 29-year-old woman.
She has written a letter to the woman’s family, but has never received a reply.
She told them: “You have saved a 17-year-old’s life that never had good lungs.”
Sophie hopes to reach out to them again on the ten-year anniversary in February next year, by which time she hopes to have reached her £10,000 fundraising target with the events she started in March.
But she says that just knowing they know about her is comforting.
For now, she’s focused on all her incredible fundraising activities to help raise as much money as possible for Harefield Hospital.
She has so far raised £2,000 through completing four events, including hosting a bake sale and a raffle, and supporting her cousin Olivia Dingley as she ran 6km every day for a month.
She is also in training for a 10km walk next month and her dad Bob, 58, is planning a skydive.
With the help of Bob, her mum Sue, 54, and her supportive boyfriend George, 28, Sophie is still coming up with new ideas for the final events later this year.
Bob has previously helped raise Sophie £3,000 for lung charities by cycling from London to Paris in 2019.
“My parents have done everything they can to ensure I’m ok, and now are during everything in their power to help other people with CF,” she says.
Sophie still has CF and regular hospital appointments are the norm for her.
She takes 35 tablets a day, including antibiotics and anti-inflammatories, to try and stop her body from rejecting the lung transplant, but she no longer needs physiotherapy.
She also suffers from CF-related diabetes, which she takes insulin for.
Incredibly, Sophie now finds things others take for granted, such as exercising and working full-time, easier every day.
“We’re all still thinking about how we can raise awareness about CF and I still count myself as extremely lucky, despite everything, because I know other people can’t live a normal life in the way I can,” she says.
“The ten-year mark is monumental, so I now want to give something back.”
The money Sophie raises will go towards heart and lung disease research at Harefield Hospital and new specialist equipment for lung and heart patients.
There is a possibility that big-hearted Sophie will need another lung transplant in the future, but at the moment she is staying positive – and putting all her efforts into helping other people who haven’t been as lucky as her.
Doctors originally only gave her eight years to live after the lung transplant – so reaching a decade while still feeling fighting fit is a huge milestone for her.
“Anything could happen,” she says.
“Nothing is concrete, and it could be that my body rejects the lungs in the future – but at the moment I am still doing really well and focusing on the present. With all the risks with infection and rejection, I am amazed at how far I have come.
“I am a very lucky person, and a lot of people in my position aren’t – I want to give back, because I can.”
- To support Sophie, visit justgiving.com/fundraising/sophie-clarke2902
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