Bexhill’s Great British Bake Off star raising money to remember daughter who died aged 18
Bexhill’s Great British Bake Off star will be walking for the Alzheimer’s society in memory of her daughter, who died at the age of 18.
Linda Rayfield, who appeared on the show in 2020, is raising money for the charity by taking part in the Memory Walk, on March 20, to remember her daughter Melissa.
Melissa was born on January 3, 1985, and diagnosed with a rare condition called Cockaynes Syndrome when she was just 18 months old.
“The internet wasn’t really accessible until the early 90`s, so I couldn’t search the condition,” said Linda. “There were no support groups and I took away a clinical explanation and some pencil drawings of a thin gangly figure with big hands and feet! I looked at my chubby little 18 month old baby and thought, you’ve made a mistake!”
Cockayne syndrome, which is also called Neill-Dingwall syndrome, is a rare and fatal autosomal recessive neurodegenerative disorder characterized by growth failure, impaired development of the nervous system, abnormal sensitivity to sunlight, eye disorders and premature aging.
It is associated with a group of disorders called leukodystrophies, which are conditions characterized by degradation of neurological white matter. The underlying disorder is a defect in a DNA repair mechanism.
Linda added: “Once I had come to terms with the facts, I cherished every moment and so did everyone who knew her.
“She was always laughing and known for her legendary hugs. She loved Disneyland almost as much as I did and we went as often as we could.
“Life still had its challenges but it was good.”
Melissa passed away when she was 18 after a ten-month decline which Linda said included ‘some very distressing changes no one could explain’.
“I did some training recently in Dementia Awareness which explained how short term memory loss affects people and soon realised Melissa had Dementia,” added Linda.
“Not surprising really considering the disorder she had, but no one could explain her uncharacteristic behaviour.
“Knowing wouldn’t have changed the outcome but it would have been a different journey. I’ve seen how having the right approach and preparing for the changes ahead can make the difference for everyone.
“I don’t underestimate the loss people feel when these changes happen but I do believe if we can lower our expectations and learn to live in their reality we can still make memories.
“I’m passionate about bringing awareness and in awe of all the wonderful people in our communities that give their time share their experiences, raise their ‘voice’ challenge barriers and lead the way to change.
“I’m fortunate that I can pursue my passion working for Stonewater Housing as we develop a strong voice for dementia and make those all important changes to support and enable people to live well with dementia.”
Linda encouraged people to make a difference by becoming a Dementia Friend and learning about the challenges people face by visiting https://www.dementiafriends.org.uk
If you would like to donate to Linda’s fundraising page, please click here.