The family of a ‘magical’ woman who died after a lifetime of constant pain has vowed to raise awareness of the rare incurable condition she suffered with.
On Monday Chelsey Austin, 22, was laid to rest after a lifelong battle with Rett syndrome.
The condition affects the development of the brain and can cause severe physical and mental disability that begins in childhood.
In her first few years it caused Chelsey, of Rowan Crescent, Biggleswade, to lose the ability to talk, crawl, stand and feed herself and by the age of 13 she had to be tube fed.
As the disorder worsened it confined Chelsey to a wheelchair and threatened to take away her ability to hold her own head, but she fought back and remained an inspiration to her parents, Teresa and Kevin, and her seven siblings.
Chelsey’s sister Nikita remembers the 22-year-old as “a truly magical young woman”.
She told the Chronicle: “Chelsey was always so happy even though she was in constant pain and suffered from horrible seizures.
“It gives you drive, when someone takes it like she did how can you complain at life?
“She took everything in her stride and was a massive fighter.
“She fought hard for everything she had and has always been a huge inspiration for me.”
Despite her mobility problems Chelsey, who died on April 15, played a full part in family life and Nikita has fond memories of her playing with her brothers and sisters.
She said: “Chelsey never missed out, if we all went out to play she would always come with us.
“She came swimming with us too...she went through a lot of wheelchairs!
“We also all went on holidays to places like Wales, I have some really amazing memories of my childhood with her.
“It was not until we were both teenagers that I really noticed any difference between us – Chelsey could see the rest of us seeing friends, having boyfriends and doing the things that she should have been doing.
“She never showed that it got to her but I noticed a difference in those ways.”
Instead of buying flowers wellwishers who attended Chelsey’s funeral were asked to donate to Reverse Rett, a charity which is working to accelerate treatments and cures for the condition.
To help support the cause Nikita and two of Chelsey’s other siblings, Mellissa and Daniel, have signed up to run a half marathon, while other family members are are also planning fundraisers.
Mum-of-two Nikita, 26, said: “In my opinion Rett syndrome is one of the worst things you can be inflicted with, to be age appropriate in your mind but to be effectively stuck in your body, I just can’t imagine what that is like.
“For us the fightback is now.
“(Reverse Rett) has made huge progress but no-one should have to go through what my sister did.”
To donate to the Austin family’s Reverse Rett fund log on to www.justgiving.com/fundraising/ChelseyAustin
The family’s target was £250 but within days it has reached £1,300.