Having cystic fibrosis means up to three hours of physiotherapy a day. But if she was able to have access to drug Orkambi, life would be so much better. She is now fund-raising to support Cystic Fibrosis Trust’s fight for the drug to be widely available.
Lucy Baxter has to do up to three hours physiotherapy everyday to maintain a good level of health.
The 21-year-old has cystic fibrosis and says as long as she keeps up her routine of physiotherapy and antibiotic treatments, she has a decent standard of living.
With a view to wanting to help fund a drug, which targets the root cause of the disease and would benefit around half of people with Cystic Fibrosis, Lucy is committed to raising funds for Cystic Fibrosis Trust.
Two years ago, she raised more than £11,000 by holding a half marathon and now she is organising a bounceathon and charity night on July 13.
Read more: Lucy to fight against Cystic Fibrosis to take part in her own half marathon
Lucy, who is in her second year of her degree in communications and media at Liverpool University, says: “I was diagnosed when I was two-and-a-half as I was not gaining weight and had a lot of chest infections.
“My condition has not changed much since I was younger.
“I get more out of breath easily if I am trying to exercise or keep up with my friends and I am more prone to chest infections.
“I have struggled to put on weight in the past. I had to put on more weight over the past two months. I had to eat a lot of hog roasts. I am now at a good weight.
“To maintain a good level of health I have to do two to three hours of extra treatment. I am very compliant and so I stick to everything properly. It takes a lot out of me to do it. I do 45 minutes to an hour of physiotherapy on my chest, morning and night and an additional inhaler antibiotic and 30 tablets morning and night.
“I would not need to do half this stuff if I was able to have the new drug. The new drug is faster to tackle the root cause of cystic fibrosis which would mean people could live a normal life and their life expectancy will go up.
“I rely heavily on my parents and it has meant I have been unable to move out of home while at university.
“It is quite tiring planning for when I go on holiday and I have to work out how many tablets I need to pack.”
Lucy regularly fund-raises for Cystic Fibrosis Trust. After organising half marathon from Burscough to New Longton, she wishes to replicate that success through Bounce for Baxter.
The sponsored bounce event will take place from 11am on July 13 at her family’s private filed of Royalty Lane, New Longton.
This will be followed by a mini music festival from 6.30pm.
Lucy adds: “I am campaigning for life saving drugs and lobbying the government and drugs companies to allow us to have this drug. I won’t stop until we get these drugs.
“I am choosing to focus on the positives and not the statistics on life expectancy. That’s why I organise fund-raisers, as I want to help others.
“The Bounce for Baxter event starts with a sponsored bounce on a space hopper. There is a choice between 300km, 1k, or 3k.
“I will be taking part and will try for 3k, which is about 10 laps and will be quite hard, but it will be a lot of fun.
“The event is for children and adults who have secretly wanted to have a go but have never been able to.
“Staff and pupils at New Longton Primary School are supporting me too and taking part.
“If anyone wants to take part, they can get in touch via my Lucy’s Leap for Life Campaign page on Facebook as unfortunately people won’t be able to turn up on the day and bounce.
“And no-one with Cystic Fibrosis is able to come to the day to avoid cross infection.
“In the evening we have food and local bands playing. It will be relaxed and good fun. We are not selling tickets, people can just make a donation in the bucket.”
To help Lucy raise funds, visit www.virginmoneygiving.com/bounceforbaxter
Lucy is supporting Cystic Fibrosis Trust’s campaign for the precision drug Orkambi, available to patients.
But the UK Government is currently locked in negotiations over the cost of the required drug with pharmaceutical firm Vertex.
Orkambi is one of the drugs which targets the root cause of the disease and would benefit around half of people with Cystic Fibrosis, according to the charity.
It has been licensed for use for more than three years.
But a deal to make it available on the NHS for patients in England, Wales and Northern Ireland has still not been reached.
During that time, another drug to treat the root cause of the condition, Symkevi, has been approved for use but is also not available on the NHS.
As part of Cystic Fibrosis Awareness Week next week, people are encouraged to put on a yellow item of clothing for Wear Yellow Day on Friday June 21.