Antonia Coleman-Harvey

I’m Antonia, I’m a recruitment consultant. I have dopa-responsive dystonia.

As a child, it caused me constant pain and other symptoms. I remember I dropped a whole bowl of hot noodles on my legs because I struggled to eat properly. I was in and out of hospital, spent time in a wheelchair until I was diagnosed with dystonia, and was prescribed a medication which changed my life. I was very self-conscious growing up and knew I was different from the other kids. When I’ve told people about my illness they’ve generally been kind and understanding, others, however made comments like, “but you’re too young to be disabled?” or “wow you’re such an inspiration.” 

However, going about my day isn’t special or inspirational and I think everyone, disability or not, should be respected for the person they are.

I want to share the message that people who suffer from dystonia aren’t victims. These conditions can often be invisible, but that doesn’t make them any less life changing.

Elise Fullard

Hello, my name is Elise, I have dystonic cerebral palsy. I got diagnosed with dystonia at around the age of 8. I decided to raise awareness of what at times can be a debilitating condition that many others and I face. As my confidence grew in so many ways, I thought it was important to join in with awareness week, as I was soon to realise not many people have heard about dystonia but also not understand what it actually is or how it effects your day to day life.

I have always loved to help others where I can, and after a fantastic response to raising awareness, I thought I’d love to become a Dystonia Young Champion. I would really like to help people feel like they aren’t alone. We dystonia warriors are stronger together, and together we can spread awareness. 🙂

Ellie Bedingfield

Hello everyone my name is Ellie. I'm from Dereham, Norfolk. I was diagnosed with dystonia in December of 2017, and since my diagnosis, I have met many people that have never heard of dystonia and that support in my area and surrounding areas is very limited and that needs to change. So not only would I like to spread awareness, I would love to support others in a similar situation to mine as going through dystonia doesn't just affect the body, it can affect feelings and emotions around it all, it can be a very lonely and upsetting time without others to talk to and I will always love to give a supportive hand in any way I can.

Jonathon Harding-Rathbone

Hello, my name is Jon, though people know me as Borderline Jon on the web due to my YouTube channel. People look at me but most of the time they don't see what's wrong with me, because it isn't obvious like many disabilities. I tell people about my condition because most people haven't heard of it, and I want to raise awareness. Most people have heard of Parkinson's, yet you mention dystonia and people look at you confused. I'm excited to work with Dayna (Dystonia UK Head of Fundraising and Communications), and the other Young Champions because the whole world needs to be able to see. But more than that, they need to understand, and those who can have the condition need to see there's help out there. We should never feel alone, yet many of us start off that way. As young champions we will strive to be seen, heard and understood. But more than that, we will help others like us because no one should ever feel alone. We can't wait to reveal more!

Liam Carbery

My name is Liam. I live in the West Midlands and have generalised dystonia affecting all my body. Along the way, I have seen many neurologists who feel that my dystonia has been caused by me being premature as well as a genetic element being probable as there is an interesting family history of Parkinson's and dystonia. I live with my twin brother and my mom and dad. I had DBS surgery in May 2018 in Sheffield. I very much look forward to working with the Young Champions hoping to build many a friendship along the way!

Lucy White

My name is Lucy, I have upper limb dystonia and spasmodic torticollis. I have recently had DBS and so far feel good and it was well worth having after years of being misdiagnosed and botulinum toxin injections. I work full time and try to enjoy life as best I can but now I just want to help others. It's a lonely life but it doesn't have to be.

Nicholas Calder-Bundy

Hi, I’m Nick. I’m 28 and live in London. When I was seven I was diagnosed with generalised dystonia. It progressed into painful spasms affecting most of my body. I was on a lot of medication and could only walk short distances so I had to use a wheelchair to get around. My specialist put me forward for (at that time) a new type of treatment known as DBS. Aged 16 this seemed like a daunting option but my specialist, parents and I decided it was worth trying. DBS has had such a positive outcome for me – I can walk much more easily and I work part time in a job I really love!

I’m proud to be taking part in such a great programme and I’m looking forward to everyone benefiting from what has been happening recently behind the scenes and in the future too!