A WOMAN who has told she wouldn’t live past the age of 18 is now pleading for help to raise £130,000 for an essential home refurbishment.

Lucy Watts MBE, 27, from Thundersley, has a life-limiting progressive condition that is so rare, doctors don’t have a name for it.

She is the only person known to have this gene mutation that has left her dependent on 24-hour care.

As her condition deteriorates, Lucy and her family now need to make drastic changes to their home.

Lucy said: “We’ve lived in this house since 2010 and we’ve slowly adapted it where we can, but that hasn’t been much as my mum cares for me.

“As my condition has deteriorated, the home has become less and less accessible for me. It’s not really safe for my staff to care for me.

“As life goes back to normal there’s not enough room for me to move around and I can’t be involved in social situations.

“We’ve tried everything, this is our last resort. I don’t like asking for help.”

The family home needs an extension to create a bigger bedroom for Lucy so her staff could care for her safely as well as creating bi-fold doors onto the garden.

Without the vital work, Lucy may have to move to a nursing home.

After spending the last year bedbound, Lucy added: “It would just allow me to be an individual and be a part of the community and peoples lives.

“As life goes back to normal there’s not enough room for me to move around and I can’t be involved in social situations.

“I don’t feel like I’m part of the world at the moment. I’m trapped in my room at home. The world is opening up but mine isn’t going to open up like everyone else’s.

“Going into nursing care I would lose everything that makes my life worth living. I would lose all quality of life.

“Every day is a blessing but every day living away from my family in nursing care wouldn’t be a quality of life for me.”

The family have now set up a fundraiser to help cover the cost of the £130,000 work.

Lucy added: “I’m so grateful to everyone that’s donated that they consider me worthy.

“People are so generous and they really can make a difference to my life.”

To donate, visit https://www.gofundme.com/f/dqmez7-a-home-for-lucy