The grieving family of award-winning disability activist Lucy Watts have paid tribute to the “amazing” woman following her death aged 29.


Lucy Watts, who was from Thundersley, had a life-limiting progressive condition which is so rare, doctors did not have a name for it.


She was the only person known to have the gene mutation which left her dependent on 24-hour care.


However, Lucy still sat on multiple NHS care committees and ran her own company for patient advocacy.


She was made an MBE for services to young people with disabilities when she was 22.

In 2021, the Thundersley community helped raise £130,000 for essential improvements to her home to allow her to continue living there.

Her family have now shared the tragic news of her death, at Southend Hospital on Wednesday (April 26), on her Facebook page.

They said yesterday: "It’s with a heavy heart and overwhelming sadness that we have to let you know that our dearest Lucy passed away in Southend Hospital yesterday at 5.45am.

"We are absolutely heart broken as you can imagine and ask for our privacy to be respected at this very difficult time.

"We hope that she is with her beloved Molly, dog with a blog and her grandparents who adored her.

"We are unable to respond to messages at this time, but we will be creating a memorial page in due course in honour of our Lucy, where people will be able to share photographs, stories and memories that we will be able to share and cherish forever."

The charity Festival Spirit has also paid tribute to their former ambassador: "Everyone at Festival Spirit is very sad to hear of the passing of the amazing Lucy Watts MBE.

"Lucy didn’t believe she would ever make it to a festival due to her complex care requirements but she came with a group from St Christopher's Hospice to WOMAD Festival and had a fantastic time. Such a good time that she became an ambassador and administrator for Festival Spirit until her health failed her.

"An incredible woman who will be greatly missed by all who knew her."