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About Me


Lucy Watts MBE


I’m Lucy, I am 23 years old and I have complex, life-limiting conditions. I was born with health problems that went undiagnosed through childhood, affecting my muscles, my bowel, my eyes and joints. These problems became progressively worse over time until I became wheelchair dependent when I was 14. Since then I’ve been on an enormous, challenging journey in which I have continuously deteriorated. I was formerly diagnosed with hypermobile Ehlers-Danlos syndrome, however in 2016 after many questions raised about my diagnosis I was told it is likely I do not have Ehlers-Danlos, but some form of neuromuscular disease, possibly a Mitochondrial Disease, or a Muscular Dystrophy-like condition or a rare or even unique genetic disorder. These conditions mean I am dependent on intravenous nutrition (TPN) through a line into my heart, hooked up to intravenous drips at least 21 hours a day, wheelchair dependent although forced to spend a lot of time in bed and needing the use of a hoist to transfer and being cared for at home by intensive care nurses. Despite the restrictions in my life, I have a good and fulfilling life and make the most of every day and everything I have. I also have my wonderful Assistance Dog Molly, who not only helps me with physical tasks and alerts me to my medical conditions, but provides companionship and a positive focus in my life. You can read more about my conditions here



My life revolves around my charitable work, for which I received an MBE in the 2016 New Years Honours for services to young people with disabilities, aged 22. This work takes the form of writing pieces such as blogs, articles and forewords, public speaking, attending events and meetings, appearing in or presenting videos and in the media, proof reading, reviewing grant applications, handling social media and websites and also advising on research. My work has taken me to the House of Commons, the Department of Health, NICE, to national conferences and important meetings. I have appeared on television and radio, in videos shown at conferences around the UK and indeed the world, even presenting one video for the National Council for Palliative Care and NHS England.

I currently hold the following positions:
  • Ambassador & Young Avenger for Together for Short Lives 
  • Global Youth Ambassador for the International Children's Palliative Care Network 
  • Trustee of the Pseudo Obstruction Research Trust
  • Ambassador for Dreams Come True
  • Member of the Open University Sexuality Alliance 
  • People in Partnership Steering Group Member for Hospice UK (formerly NCPC)
  • Trailblazer for Muscular Dystrophy UK
  • Young People's Lead for the Digital Legacy Association 
  • Member of the NHS England Complex Needs Board
  • Lay member for NICE End of Life Guideline Committee
  • Lead Co-Researcher for Living Life To The Fullest 
  • Patient Reviewer for the British Medical Journal
  • HuffPost blogger

I am truly honoured to be involved with these charities and various others on an intermittent or one-off basis, to be be offered the opportunities I receive and to have been recognised by the Queen with my MBE in recognition for my work. You can find out more about my work here and if you would like my services, head over to the dedicated page here. You can also see my achievements page here. 

Aside from my illness and my charity work, I enjoy photography, making videos, editing photos and images, reading and learning, training Molly, watching documentaries and visiting the stables I used to ride at and spending time with the horses. 


Molly is my Assistance Dog, she was trained by myself with help from a charity called Dog Assistance in Disability (Dog A.I.D). We got Molly has an 8 week old puppy in March 2013 as a family pet, but she showed a natural aptitude for helping me and for learning and so when we found out about Dog A.I.D I applied, Molly was assessed and she was accepted onto the scheme at 10 months old. We qualified on the 6th September 2016, having taken almost 3 years to qualify, but we’d had 18 months off where I was too poorly to train Molly so in reality she only had 18 months training. Life has changed since she qualified. Molly loves her job, she loves helping and working and is a wonderful help to me. She comes to my hospital appointments, charity events and meetings and on days out. Molly loves meeting new people - and showing off her tasks and tricks. She’s already been to the House of Commons, to NICE, on the London Eye, to the Shard, on the Emirates Cable Cars and more. She is the light of my life. You can find out more on our website www.lucyandmolly.co.uk





1 comment:

  1. Hi Lucy. I read your article on Huff.Post.
    I was really impressed how strong you are.
    And we can see clearly. You do no need a healthy body to achieve such great efforts and memories. Also with limited conditions and a strong mind you can achieve so much.
    I´m here to tell you, that im very proud of you. Doesn´t matter i never met you.
    You are sweet and i´m impressed about your story. Wish you all the best.
    Michael

    ReplyDelete

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