AN inspirational Thundersley woman has been named as the first youth ambassador for a worldwide charity that supports terminally ill children and teenagers.

Lucy Watts, 21, was handpicked for the prestigious role at the International Children’s Palliative Care Network due to her work raising awareness of the issues facing youngsters with disabilities and rare diseases.

She fights a daily battle with Ehlers-Danlos syndrome, a rare tissue disorder which has left her inawheelchair and suffering intense periods of pain and chronic fatigue since she was 14.

The life-limiting illness, caused by a defect in the body’s collagen, means Lucy, who aspires to be a doctor, struggles to sit up unaided and has to be fed through a tube.

Brave Lucy already has a long list of achievements behind her, and last year won the Friends for Life award at Crufts, alongside her beloved dog, Molly.

She said: “My biggest fear in life is that I won’t have made a difference, that my life won’t mean anything. I hope I ammaking 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.”

In Lucy’s new role she will share in the work of the International Children’s Palliative Care Network, which aims to develop an international directory of care professionals, and make more people aware of the needs of poorly children and their families.

Joan Marston, chief executive of the charity, said: “It is such a privilege to have Lucy as our very first youth ambassador.

“Her track record in raising awareness of important issues related to children and young people with rare diseases, disabilities and chronic or lifeshortening conditions is impressive and makes her a perfect fit for the message that we wish to share with the world.”