“I believe there is something powerful about turning a routine that I usually dread into something interesting and beautiful!”: Tim’s story
Growing up with CF
I was born at Watford General Hospital in 1977 - it was one of the first hospitals in the UK that did early testing for cystic fibrosis (CF). I wasn't putting on weight as a baby, so I was tested and my parents were told that I had CF.
My younger brother Matthew was also born with CF and he had a rougher start to life than I did, he had lots of complications and was in hospital for the first two years of his life. My parents were honest with us and told us about our condition at a young age, which helped me to process and understand everything.
My teachers and friends knew that I had CF and I didn’t have any issues at school. I had a normal childhood, but I do have memories of being at primary school and making a game of how many tablets I had to take with my lunch.
I had great friends at school and one of my best friends was a percussionist so we taught him how to do my physio and he practised timpani parts on my chest!
Enjoying life and starting a family
I had my first hospital admission when I was 16 years old and I have been very fortunate that I have only been admitted every few years since then.
I started taking Kaftrio four years ago and that was a major turning point for me. My health has been great ever since and I feel as good as I did when I was in early adulthood. I also do regular physio and exercising which helps too. As I’m in my forties now I experience the normal aches and pains, but overall I’m in good health and haven’t been in hospital in the past four years.
I’m enjoying a full life. I work as a writer and copy editor and I have a beautiful wife Elizabeth and two kids. My eldest Alex is 16 years old and just started college this year and my son Conor is 13 years old, so he's in year 8 at secondary school. They were both conceived via a donor due to the fertility issues that many people living with CF face. We’re a happy family and I’m a very proud father!
The support I received from the Trust
I remember reading lots of information and resources when I was a teenager about living with CF and it was really useful for the questions I had around having a family one day.
When my brother and I were young the charity was known as CF Research Trust, and it was focused on research and campaigning work which had a truly positive impact on my life. My brother and I also got support from the Trust for benefit claims such as attendance allowance and when I had to reapply for my PIP.
Inspiration for taking parting in the concerto
I started playing music when I was a teenager: my Dad is a pianist and I have always loved music. I played the oboe and enjoyed going on school orchestra trips - the biggest highlight was when I went on a music trip to Canada for the week. I chose the oboe because as a wind instrument it helped with my airway clearance.
A few years ago, I met the flautist Kathryn Williams who was working on this incredible project titled Coming up for Air. Kathryn has also experienced chronic respiratory conditions and her difficulties and challenges with breathing previously limited the music she could make. This inspired her to ask composers to write a piece of music that she could play, with the limitation that they can only be one breath long. Now she has more than 100 composers who have written pieces for her, and she has taken back her power to create inspiring music.
I wanted to write a piece of music for this project because I could relate to the challenges that Kathryn and other musicians face when they are living with a condition that affects the lungs. My piece transforms the standard spirometry test into a musical action. Basically, Kathryn does a lung function test, but using her flute instead of a spirometer. Kathryn uses nose clips too to give it a theatrical element. Lung function tests are often a challenging fact of life with CF, and I believe there is something powerful about turning a routine that I usually dread into something interesting and beautiful!
On 21 November, Kathryn Williams with composer Larry Goves and the Luxembourg Philharmonic will give the world premiere at the Rainy Days music festival in Luxembourg of Coming up for Air, which will be a concerto for flute and orchestra made out of 46 of her one breath pieces. I’m very much looking forward to seeing my composition being played as part of the concerto. My family and friends are also very excited and can’t wait for the big day!
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