Introducing Lucy, our inspirational new ambassador

Lucy is an inspirational young woman whose dream we are currently working to fulfil. Despite being seriously ill herself she works with a number of charities to help others in similar situations and has even spoken in parliament. She has a very special relationship with her dog Molly and together they won the 'Friends for life' award at Crufts. Here is her story...

Lucy is an inspirational young woman whose dream we are currently working to fulfil. Despite being seriously ill herself she works with a number of charities to help others in similar situations and has even spoken in parliament. She has a very special relationship with her dog Molly and together they won the 'Friends for life' award at Crufts. Here is her story...

Lucy

Lucy and her dog Molly

My name is Lucy Watts and I am 21. I have a genetic condition called Ehlers-Danlos Syndrome which has caused intestinal failure and other complications. The severity of my condition and the complications mean that I am classed as life limited.

I am fed directly into my bloodstream via a line in my heart and have other bags and tubes. I am wheelchair bound but forced to spend the majority of my time in bed. My autonomic nervous system (the unconscious function control system) doesn’t work so I can’t sit up for long as my heart races and my blood pressure drops.

I live in chronic pain and have a lot of health problems which results in weekly appointments in London and frequent hospital stays. It takes a lot of coordinating. I am fortunate to have a fantastic mum, my main carer, who has learnt a vast array of nursing and medical techniques to keep me alive and at home.

I have an elder sister Vicky, 24, who lives at home with mum and I. I also have a great network of friends, both online and in person, who support me and keep me going. I’ve been fortunate enough to meet some of my online friends, one of whom is coming over from America just to see me. My network of friends have helped me through some difficult times and likewise I hope do the same for them.

I have a dog called Molly who is my life and with whom I won the Friends for Life Award at Crufts (the world’s biggest dog show). She is a working Cocker Spaniel, one year old, and is in training to become my assistance dog. I live for the days I am able to sit up and train her. My other love, aside from writing and speaking, and walking and training Molly, is photography. My favourite subjects are Molly (of course!), nature and wildlife - especially butterflies and bees.

Charity work

Lucy speaking at Together for Short Lives

I write and speak for a number of charities and am involved in many projects. Writing and speaking are hobbies I have developed since becoming ill and it’s nice to be able to put these to good use. I am so pleased to have been asked to become an Ambassador for Dreams Come True because, granting my wish aside, what they do is hugely important and I have friends whose lives have been brightened and enriched by a wish. It is an honour and a pleasure. I can’t do much for myself anymore but I can write and I can speak and I am trying to make a difference using those abilities.

I work with the charity Together for Short Lives to improve the transition period from children’s to adult’s services.

My own transition was not the best - there was no policy really. I went from being on a children’s ward with my mum with me 24/7 and making decisions for me, to being on an adult ward with five dementia patients and a completely new team of doctors. I was suddenly expected to make decisions for myself without the support of my mum, who was limited to visiting time to see me. This meant she wasn’t there when the doctors were coming round and asking me to make decisions.

Paediatric (children’s) services are a world away from the adult services, and it’s a big leap when you are transitioned over. It can be quite a scary time: many children have got to know their paediatric doctors and the nurses and play specialists etc. and they know everything about the child. They then have to start again with adult doctors, a lot less support staff and adult wards which aren’t equipped for young people.

I spoke in Parliament about the transition period and things are starting to change. Someone even sent my speech to my main consultant who is now using my experience to improve the transition period in his service.

Lucy writing her blog

I hope I am making a difference. My greatest fear in life is that my life won’t mean anything and nothing would have changed because of me. Through my writing and speaking I’ve been to some lovely places, including the Houses of Parliament.

I am now a member of the Children and Young People’s Health Outcomes Forum, have done work for a number of charities including the Council for Disabled Children, the National Council for Palliative Care, the International Children’s Palliative Care Network, National Voices and the Pseudo Obstruction Research Trust, and others, and I have a focus and a purpose.

Being able to help and support others, and being asked to write and speak for charities and projects, such as my recent conversation for The British Library and BBC Radio 4’s Listening Project, called Living While Dying (it can be viewed on the BBC iplayer), filming for the Council for Disabled Children, and writing the foreword to the Difficult Conversations resource by the National Council for Palliative Care, gives me a wonderful feeling and gives my life a focus. I thrive on the projects given to me.

I also have my own blog www.lucy-watts.co.uk where I tackle a range of subjects including health and disability topics, which now has over 47,000 views. It’s an honour and a pleasure to be able to do all of this, and I am grateful to the charities for giving me these opportunities; I hope to be able to do the same for Dreams Come True.

People often ask me how I cope and say they feel they wouldn't be able to come to terms with the hand I have been dealt. I wouldn't choose this path if I had been given an option, but I also realise that though I have lost the life I thought would be mine, I have gained so much; friendships, understanding, compassion, laughter, a test of my own character, an insight into the world of illness and disability, but above all, an appreciation of each new day and the joy of being alive.

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Author: Hannah

Date: 01/10/2014

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