A mother from Gaywood is trying to raise awareness of a rare disorder that has left her daughter trapped in her own body and requiring round-the-clock care.
Kerry Moore, 47, of Bagge Road, is a full-time carer for her 23-year-old daughter, Chelsea Pownall, who was diagnosed with Rett Syndrome when she was four years old.
As part of Rett Syndrome Awareness Month, Mrs Moore is trying to raise the profile of a genetic disorder that has left Chelsea unable to speak and struggling to walk.
Mrs Moore said: “Rett Syndrome is not picked up at birth. It mainly affects girls and they develop normally until they are around a year old, then they start to regress.
“You start to notice little changes but you can’t quite put your finger on what is different. I was told I was a paranoid mother. It was awful.”
The regression means those affected forget everything they have learned, including how to chew and swallow food, many end up being fed through a tube and forget how to walk and speak.
Genetic, but not hereditary, the condition causes profound learning and physical disabilities and by adulthood, only half will walk.
Mrs Moore said: “Nobody really knows how much they understand because of the lack of speech. It is challenging, but her smile just lights the heart and I wouldn’t change it for the world.”
Epilepsy, chronic spinal curvature and breathing problems are also common problems.
Mrs Moore said: “We’re just lucky Chelsea is as healthy as she is.”
She had her second daughter, Ellie, before Chelsea was diagnosed and was terrified that the same could happen.
She said: “When Chelsea was diagnosed they didn’t even know what gene was causing the disorder.
“It was so hard, everything was a challenge and I found myself explaining to doctors again and again.
“The gene has now actually been reversed in mice in the UK and they have been cured of the disease.
“It’s incredible and this is why it is so important to raise awareness and money for research.
“Whether there will be a cure in Chelsea’s lifetime is another thing, but it is an amazing breakthrough.”
In the meantime, Mrs Moore finds comfort and support in social media where the parents of sufferers share their experiences.
She said: “There’s a lot more support now with Facebook.
“When Chelsea was diagnosed, I was sent away with a leaflet, which was good, because I wasn’t overwhelmed with information.”
To find out more on Retts, go to www.rettuk.org for information.