I can run marathon thanks to drugs

A YOUNG woman with cystic fibrosis is to run the London Marathon to help fund reseach.

Nell Summerley, 21, from Britwell Salome, will take part in the race on Sunday, April 21 to raise money for the Cystic Fibrosis Trust.

She was eight when she was diagnosed with the genetic disorder, which causes sticky mucus to build up in the lungs and digestive system. Her brother Charlie, now 23, also has it.

She spent the next 10 years in and out of hospital for treatment.

However, she is now able to lead as near a normal life as possible with the arrival of “miracle” drugs Symkevi and Kalydeco in 2020 and Kaftrio in 2022.

The drugs target the F508del gene mutation which Miss Summerley and her brother carry, although they do not work for everyone with CF.

Miss Summerley said: “From age eight to 18 I struggled a lot. I had a lot of time off school and in hospital and there were some real lows.

“Because of other people fund-
raising, I was able to start this miracle drug and since then my health has improved so much I have been able to start running and keep up with my friends. It’s amazing and I am so grateful.”

She wants to raise money to give others with the condition access to treatment.

Miss Summerley said: “This miracle drug doesn’t work for everyone with CF and there is still no cure, which is why it is so important to continue raising money and awareness.

“I hope that one day everyone with CF can have the chance to feel the same way I do and run the marathon if they fancy it — or are crazy enough.”

She has dreamt of running the London Marathon since watching her father take part in 2012, the year after she was diagnosed, to raise money for the trust.

When her cousin Milo ran the marathon last year she decided to sign up.

Miss Summerley said: “I was active to some extent before but was held back by CF. The running really helps my condition, as does any physical activity, but obviously you need to be well enough to do it.

“I am running the marathon for the achievement really. I have no time goal, I just want to get across that line. I have my whole family coming and lots of friends.”

Cystic fibrosis affects more than 10,800 people in the UK. Those with the condition often have poor lung function and are more susceptible to chest infections and other illnesses.

One in 25 people is a carrier of the faulty gene that causes it, often unaware. These include Miss Summerley’s parents, Louise and Tim, and younger brother Jack, 18.

She said: “When you catch a normal cold, most people will be able to get on with it, but if I don’t get on top of it I could end up really quite ill.

“I have to stay on top of my treatments. That includes getting up early to get in my physiotherapy and medication. When I was young, I found it particularly frustrating not being able to do things on school trips such as caving because of the bacteria and not being able to keep up with my friends. That’s different now I am older.”

Miss Summerley, who is studying for a hospitality and tourism management degree at Bournemouth University and currently on placement working at a hotel in Studland Bay, Dorset, has been running on and off since 2020.

She has been training more consistently since signing up for the marathon last May. She said: “I am very much a countryside runner. It’s lovely down by the seaside and there is lots of different terrain.

“I was a bit apprehensive about going to university so I took a gap year and was working for a bit as I was not ready but I have met the most amazing people and have ended up in this job, which I love.

“Before the miracle drug the amount I was off school ill made me anxious. I thought, ‘How am I meant to hold down a job?’

“But I have been working full-time for the last eight nine months and I have never had to call in sick, which is amazing for me. Now I function as a near enough normal person.”

Her mother said: “I am excited for her but I think she will find the marathon really tough. It’s a huge achievement.”

Mrs Summerley said the new drugs had been life-changing for the whole family.

“You wouldn’t wish CF on anyone,” she said. “There was a lot of treatment when the children were growing up and a lot of physio. They were doing nebulisers three times a day to help get the mucus out.

“The new drugs get the cells working properly instead of just treating the symptoms. That’s why they are so amazing.

“The progress in medicine since the children were first diagnosed has been amazing. Now they both lead a normal life.”

Today most cases of cystic fibrosis are picked up at birth using the newborn screening heel prick test but this was not an option when Miss Summerley and her brother were born.

Mrs Summerley said: “They had both been poorly when they were younger and it was picked up at the Royal Berks with Nell and then they did a sibling test.

“We had no idea we were carriers — it was a huge shock. I didn’t know what CF was.”

Over the years Mrs Summerley has organised several fundraising events to raise money for research. These include a bridge drive that the family have held for the last 12 years at Benson parish hall. The latest event, held last month, raised £7,688.

Anne Shinkwin, director of fundraising at the trust, said: “Thanks to the dedication and support from our community, we have achieved a lot in the last 60 years.

“We couldn’t do what we do without the support we get from our amazing fundraisers like Nell. We are so grateful for their time, effort and dedication in raising funds for vital research and support. Thank you, Nell, and the best of luck.”

To make a donation, visit https://2024tcslondonmarathon.
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