Brave youngster battling muscular dystrophy takes part in cutting-edge clinical trials in Leeds to help others
A brave youngster who is battling a rare disease is taking part in cutting-edge clinical trials in Leeds to help find better treatments for children like him.
Austin Foster, 11, was diagnosed with Duchenne muscular dystrophy (DMD) at just two years old - a progressive condition that will eventually take away his ability to walk.
The inspirational schoolboy is determined to make a difference and has been travelling over eight hours each week with his family to take part in the pioneering drug trial at Leeds Children’s Hospital.
He has now received more than 130 infusions as part of the study - and said he’s doing it not just for himself, but to help others.
While Austin knows that he will lose the ability to walk, he told his mum: “I want to help boys in the future walk longer.”
The neuromuscular service at Leeds Children’s Hospital has received major funding to support the pioneering new research. Charities Duchenne UK and Leeds Hospital Charity have joined together to fund two roles at the service for five years.
They are collectively donating over £300,000 to the service because of its track-record as a centre for excellence in paediatric neuromuscular care and cutting-edge research. The service currently looks after nearly 500 children with neuromuscular conditions from across the Yorkshire region.
Neuromuscular disorders are a diverse group of conditions that affect the muscles or the nerves that control them, leading to muscle weakness and other symptoms.
While there has been progress in research into new treatments for some neuromuscular conditions, there is still a huge need for new and more effective treatments. This includes conditions such as Duchenne muscular dystrophy (DMD), the most common and severe type of childhood muscular dystrophy.
The neuromuscular service at Leeds Teaching Hospitals NHS has been at the forefront of research into new treatments. The team have delivered a number of firsts.
They have been the first site to recruit to a number of DMD studies in the UK and recently delivered the first Phase 1 trial in the children’s research unit, looking at a new treatment for DMD.
Before youngster Austin was diagnosed, his mum Maxine initially thought he had a virus and took him to hospital, where he spent the next month having tests.
Three years ago, he began the trial at the Leeds Children’s Clinical Research Facility. For Austin’s family, the opportunity to participate in clinical trials has been a lifeline, offering hope to other families to find better treatments and eventually a cure.
Austin’s current trial ends in September, but Maxine said if he chooses to continue to take part in research trials, they will continue to visit hospitals up and down the country.
She said: “From the moment Austin was diagnosed, our world changed. Nothing could have prepared me for the grief of knowing his life would be cut short.
“But through the darkness, clinical trials gave us hope. The support from the team in Leeds has been incredible; they’ve become like family. Research is vital, not just for medical breakthroughs, but for families like ours to feel less alone. Austin is paving the way, and we’re so proud of him.”
To sustain its current level of local and national engagement in clinical care and research activity, while maximising the opportunity to take on studies of Advance Therapy Investigational Medical Products (ATIMPS) including gene therapy trials, the service needed additional staff and more neuromuscular consultant time.
The funding from Duchenne UK and Leeds Hospital Charity will go towards funding the role of Consultant Paediatric Neurologist Dr Anne-Marie Childs. Dr Childs said the funding would be enable the service to plan for the future.
Emily Reuben OBE, Co-founder and Chief Executive of Duchenne UK, said: “As the mother of a teenager who was diagnosed with Duchenne muscular dystrophy fifteen years ago, I remember the horror at discovering the lack of research into and treatments for his condition. That’s what led me to set up Duchenne UK and fund and support research since then.
“While important progress has been made, there is a lot further to go. That’s why we are making this substantial donation to support Leeds Teaching Hospitals NHS Trust’s pioneering research.”
Esther Wakeman, Chief Executive of Leeds Hospitals Charity said: “Having a child diagnosed with a neuromuscular disorder is a life-changing event for any family.
“The neuromuscular service here in Leeds is already doing fantastic work in supporting patients and families from across the North of England; we’re thrilled to be making this investment so they can support even more families and continue the search for new treatments.”