Still a life worth living

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Lucy is one such human. Diagnosed at 11 years old with Ehlers-Danlos Syndrome, a disease with life-limiting complications, she was told at 17 that she had five years left to live. Lucy is now 23, and in a new blog post, writes candidly about her deteriorating health, potential complications, and interrogates the experience of living with the knowledge of a shortened life.

An active charity worker and children’s palliative care champion, writer, public speaker, and successful trainer of her assistance dog, Molly, Lucy has achieved more in her 23 years than some people could if they lived to be 100.

“I am driven by my need, desire and ability to make a difference,” says Lucy, “however much harder it becomes to do that, I shall keep on doing it for as long as possible.” Her aptly named blog: ‘Lucy’s Light’ provides guidance to many, and she is a personal inspiration to me.

About her prognosis, Lucy writes: “My visions of far exceeding those five years is unlikely. Sure I could have a year, two or three years, or more – but I could, and very well might not.”

Being confronted with the end of one’s life in such an unequivocal way is something that people in a state of good health find difficult to contemplate. Indeed, many of the complicating factors that arise at the end of life or after death, could be avoided if we had taken the time to plan while we were healthy.

Lucy says: “I hope that I can not only inspire people to truly live and appreciate all the good, but to plan for all eventualities, including making a will, appointing a Lasting Power of Attorney who could make decisions for you should you ever lack capacity and making your wishes known… So get planning! Don’t wait until it’s too late.”

Despite the limitations imposed by her illness, Lucy maintains that “life is for living,” and takes that mantra to the full. Her long list of achievements, including being awarded her MBE by Prince Charles, and being appointed Project Advisor on a new medical research project are evidence of that.

Lucy has dedicated her life to speaking honestly about her illness, and has helped huge numbers of people around the world through her work.

Billions of people have lived on this planet, but every now and again one comes along who truly shines.

Read Lucy’s blog, Lucy’s Light online. 

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