Lucy, a 21 year old from the UK, who despite being disabled and living with a chronic, life limiting illness, has already made an enormous impact on the world through her writing and speaking activities.
Diagnosed with Ehlers-Danlos Syndrome (EDS), an inherited genetic connective tissue disorder caused by a defect in the protein collagen, as well as intestinal failure, Lucy’s condition confines her to bed most of the time, although she is able to spend short periods sitting up in a wheelchair. And she relishes the times that she is able to train and walk her precious dog, Molly.
Lucy has a long list of achievements behind her name and is a passionate advocate for a number of charities. She recently took on the role of trustee for the Pseudo Obstruction Research Trust and is an ambassador for both Together for Short Lives, the leading UK National Charity advocating for children with life limited conditions as well as Dreams Come True, a charity which grants wishes to seriously and terminally ill children up to the age of 21.
She was the recipient of the Diana Award and the Jack Peachey Award, both in 2010, and along with her dog, Molly, won Friends for Life at Crufts in 2014.
“It is such a privilege to have Lucy as our very first youth ambassador,” says Joan Marston, CEO of the ICPCN.
“Her existing track record in raising awareness of important issues related to children and young people with rare diseases, disabilities and chronic or life-shortening conditions is impressive and makes her a ‘perfect fit’ for the message that ICPCN wishes to share with the world. We look forward to working with her to heighten global awareness of the needs of millions of life-limited children and their families and how palliative care can meet these needs.”
Talking about the importance of doing what she can to raise awareness of the things that matter, Lucy has this to say, “My biggest fear in life is that I won’t have made a difference, that my life won’t mean anything. I hope I am making a difference with what I am doing. I am forced to spend the majority of my time in bed and am dependent on others for almost everything, and when not in bed I am confined to my wheelchair. However this does not matter to me, it won’t stop me doing all the things I enjoy. I can’t be independent in many ways but being able to write, speak and move about in my electric wheelchair is enough for me. You have to make the most of what you’ve got and not dwell on all the things you haven’t, especially when your time is limited like mine is.”