My name is Tully Kearney. I'm from Aldridge which is a village north of Birmingham, but live in Manchester during term time. I was born with cerebral palsy but started to show early warning signs of developing dystonia when I was 13 years of age.

It took 2 years, many tests, and 2 specialist neurologists for me to be finally diagnosed with generalised dystonia. Since then my condition has progressed but I try hard not to let dystonia rule my life. I'm at Manchester Metropolitan University studying Physiology. I am also a para swimmer and first represented Great Britain in 2011 when I was 14.

My best results were in 2015 when I competed at the IPC World Swimming Championships and became four times World Champion! Overall, I won 4 golds, a silver and a bronze and was GBs highest medal earner at the championships. I was runner up for the BBC Young Sports Personality of the Year, shortlisted for the Sunday Times Sportswoman of the Year and won the British Swimming Emerging Athlete of the Year and the ASA Para Performance Athlete of the Year, and named Birmingham Amateur Sportswoman of the Year.

Everything was going so well for me and I was selected to swim at the Paralympic Games in Rio in 2016. Sadly, my dystonia progressed and I had to withdraw from the games two weeks before I was due to fly out. I basically had to learn to swim again and discover what my body could still do or not do in the water. I was reclassified in 2017 because of my increased level of disability and returned to major competition at the 2017 Summer Nationals where I won 2 golds and ended the year ranked 2nd in the world rankings in S7 400m Freestyle. Since then I've continued to work really hard training 6 times a week in the pool and in the gym. Outside of my studies and training I love my three cats and sewing - my current project is attempting to make myself a new training cozzie!

My life with dystonia has not been easy or straightforward, and the unpredictable nature of the condition can be hard to deal with. I am determined to try to carry on with my life and stay positive and I think it's important for people with chronic conditions to try to find something to focus on which they enjoy, whether that be sport or something else. My motto is 'Life... Be In It.'

It is a real honour for me to be asked to be a patron of Dystonia UK, an organisation which is very close to my heart.

Update from Dystonia UK:

Huge congratulations to Tully, who not only won both a gold and silver medal at the Tokyo Paralympics in 2021 but also smashed a world record too!

We want to thank Tully for using her amazing profile as a now Paralympic champion (!) to raise awareness of dystonia. Tully has continually highlighted the impact dystonia has had on her road to the Paralympics, helping to grow awareness internationally and we are in awe.