Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Echo: ‘My reason for fighting’ – Lucy with her dog Molly

‘My reason for fighting’ – Lucy with her dog Molly. Lucy has Ehlers Danlos Syndrome.

We are tracking Lucy’s progress as an advocate for Ehlers Danlos Syndrome awareness in the UK. Lucy and her dog Molly won the “Friends for Life” award at Crufts. Watch her inspiring video which demonstrates her perseverance and positivity as she fights life-threatening symptoms.

INSPIRATIONAL Lucy Watts has made a short film to chart a day in her life coping with a life-threatening illness.

Lucy, 20, from Benfleet, suffers from Ehlers-Danlos syndrome and is supported by the J’s Hospice in Chelmsford.

She has filmed some of her most vulnerable moments – such as receiving her medication through a Hickman line, straight into her heart – to raise awareness of Children’s Hospice Week.

The syndrome is a genetic collagen disease affecting the connective tissues that provide the support in skin, tendons, ligaments and bones.

Lucy said: “I have to have all my nutrition and my medication through this, as I cannot absorb through my gut.

“It’s a very technical process to administer, but you get used to it after a little while.”

The film, which was released for Children’s Hospice Week, also introduces Lucy’s dog Molly, who she describes as “the light of my life”. The pair won the Friends for Life award at Crufts. Lucy said: “She’s my reason for fighting. My reason for keeping going and she’s probably the best motivating thing for me.”

Last November, Lucy attended a parliamentary debate at Westminster, where she spoke about the importance of children’s hospices, her own personal battle and how, at just 20 years old, she is making preparations for her own death.

She said: “My computer is my link to the outside world.

One of my hobbies is writing. I have a blog and I also write for Together for Short Lives and other charities.

“My own blog ( has over 25,000 views, which is amazing considering I’ve not really been able to do much.”

Lucy’s mum Kate also appears on the short film, preparing Lucy’s medication.

 We are so encouraged by the passion that this young lady projects for Ehlers Danlos Syndrome awareness. 

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