To publish a book that will help and inspire young people with life-limiting or life-shortening conditions and disabilities. The book is about accomplishing so much against the odds.
About the project
“One of my biggest fears is that nothing will come out of my life.... I don't necessarily want people to know who I am or know what I did…. I just want something to be different because of me.” Lucy Watts, aged 21
Courage is Compulsory shares the stories of Lucy, Tori and Sam; three young adults in their 20s, each facing enormous challenges because of life-limiting, or life-shortening, conditions. All are achieving remarkable things in their lives in spite of, or because of, their conditions.
Why is this book being written and who is it for?
“This book tells our individual stories, of our trials and tribulations, our hurdles and how we overcome them. It's our legacy to pass on to other disabled people, and their families, during their time of need.” Tori, aged 27
Lucy, Tori and Sam realise that writing their stories will be therapeutic for them but more importantly, they believe that their stories will help others:
* The book will be an inspiration to other young people facing similar challenges.
* It will show families of young people diagnosed with life-limiting conditions that their lives can be fulfilled and will give optimism for the future.
* It will show health and care professionals that they should never underestimate the potential of young people.
* It will describe to general readers stories of immense resilience and courage, and perhaps alter perceptions about disability.
How much funding do we need?
The total cost for the project is £12,000 and we need to raise the full amount, or we get nothing! The book will be about 80 pages, colour, 210mm x 209mm
This is a not-for-profit project
Proceeds from the sale of the book will go to Together for Short Lives, the leading UK charity for all children and young people with life-threatening and life-limiting conditions, and all those who support, love and care for them.
If we are fortunate enough to overfund this project, we will donate the additional funds to Together for Short Lives for their work supporting young people with life-limiting conditions making the transition to adult services. You can learn more about Together for Short Lives here http://www.togetherforshortlives.org.uk
Lucy, Tori and Sam really want to make a difference with their lives. They deserve our support, as do the charities that provide help to others living with the conditions. We can help by getting as many people as possible to support this remarkable project.
Information about rewards
T shirts. Black only; available in S, M, L and XL. Excellent quality thick cotton; organic printing. Please ensure that you let us know which size you want.
See You in September, written by Joanne Teague, is a hilarious and uplifting true life adventure across Europe with a family. Jo was diagnosed with Ehlers-Danlos Syndrome a few months before the family set off. Signed by the author.
The Phlunk books, published by Strata Books, are children’s stories beautifully illustrated by Tori Elliott.
Grippy leads are unlike other dog leads on the market. They feature an innovative multi-loop design that allows you to walk your dog at various distances. www.grippyleads.co.uk Lucy’s dog, Molly, has one! Value £18.
Meet Lucy, Tori and Sam, and be inspired …….
I’m Lucy, I’m 21 and I have life-limiting complications of Ehlers-Danlos Syndrome. I am bed bound but able to spend short periods in my electric wheelchair which elevates my legs and can lay me down. I am fed intravenous nutrition into my bloodstream via a line in my heart, and receive the majority of my medications through this too.
I try to stay positive and use my experiences constructively, campaigning to improve health and social care and doing lots of charity work. I am Ambassador for Together for Short Lives, Global Youth Ambassador for the International Children’s Palliative Care Network, Trustee for the Pseudo Obstruction Research Trust and Ambassador for Dreams Come True. I am a Diana Award recipient and Jack Petchey Award winner.
I have a wonderful assistance dog in training, Molly, who is my world, and I live at home with my mum and elder sister. We have learnt to laugh over the 7 years I’ve been ill and we are very close. You can read more about me at www.lucy-watts.co.uk, and you can like me on Facebook www.facebook.com/lucyslightuk and follow me on Twitter www.twitter.com/LucyAlexandria.
I’m Tori, 27 years old and an extremely motivated and enthusiastic person who happens to be in a wheelchair and has Spinal Muscular Atrophy Type 2.
I have a passion for travel and aiding other disabled people to do the same through Our SMAll Adventure, a free resource for disabled travellers (www.oursmalladventure.co.uk).
Although classed as severely disabled, I’m determined and ambitious and I studied illustration at Falmouth University. I have illustrated children’s fiction books and my design work is something I can do completely independently when I usually have to seek help for the most mundane tasks. www.torielliott.co.uk
I’m Sam, 29 years old and living in Somerset. I have Spinal Muscular Atrophy and I’m wheelchair bound but have never let my disability define who I am. I went to mainstream schools and studied Design and Marketing at university. I’ve had several jobs, including teaching Design and Fine Art.
I live a full life pursuing interests in the arts and gardening, helping friends at various Festivals and giving talks. I want to be able to make a difference and I hope that my experiences may inspire others.
My current project is to design and build (with lots of help) a caravan to make travelling easier for wheelchair users – a kind of House Box that will give them the freedom to travel and explore, with everything they need on board.
“It’s important to see the possibilities and not the boundaries in life.”
Together for Short Lives: http://www.togetherforshortlives.org.uk
Ehlers-Danlos Syndrome: http://www.ehlers-danlos.org
Spinal Muscular Atrophy Support UK : http://www.smasupportuk.org.uk
The SMA Trust: http://www.smatrust.org
Muscular Dystrophy UK : http://www.musculardystrophyuk.org
Hypermobility Syndromes Association: http://hypermobility.org