A MUM has told of her agony at seeing her six-year-old daughter suffer from incurable dementia.
Kaycee Bradshaw has Barren disease, a condition affecting everything from her mobility to her mental health, and one that means she is unlikely to live beyond the age of 12.
Mum-of-six Claire told the Manchester Evening News that she first noticed symptoms in September 2015, when Kaycee began suffering tics, then epilepsy.
Horrified, the 45-year-old saw how Kaycee began falling to the floor for no reason and suffered delayed speech.
“We visited the doctor and asked why Kaycee wasn’t developing like a normal child,” Claire said. “After that, we went through 16 months of pure hell – with countless blood tests and MRI scans to figure out what was wrong.
“During that time, Kaycee was only getting worse. She was losing teeth, as she kept falling over and could barely walk properly.”
The family were eventually told she suffered CLN2 Batten disease. Only five to six children are diagnosed with the the disease each year.
“The nurse who gave the diagnosis had to Google it right in front of us, because even she didn’t know what it was”, Claire said.
“None of us had ever heard of it. There had never even been a known case in our area, but we were told it was terminal there and then.”
Claire and Kaycee’s stepdad were faced with telling her five siblings, aged from ten to 27, of the horrifying diagnosis.
“It was a complete nightmare, which will always be permanently etched on my brain. It was truly heartbreaking”, the mum from St Helen’s, Manchester, revealed.
Claire says that one of the worst aspects of Batten disease, is that unlike an elderly person suffering the condition, all her daughter wants to do is run around and play with other children.
“She has frequent short-term memory loss and can barely recall what she does during the day,” she said.
“Her vocabulary is extremely limited. She can say, ‘mum’ and various grunts and groans, which only her family can interpret. Often she wears nappies and drools – at her worst times, she’s a mess.”
Kaycee is currently undergoing cerliponase alfa treatment, a form of enzyme replacement therapy administered directly into the brain, that can slow down progression of the condition.
When Claire married her husband Greg Riley, 47, in October, she made Kycee bridesmaid for her big day and asked all guests to wear orange, the colour of Batten disease.
“I cried when I walked down the aisle, but I wasn’t crying because I was marrying the love of my life, I was crying because I was thinking about all those boys and girls who have died from this condition”, Claire said.
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“But seeing them all there in that sea of orange, made my heart swell.”
Her wedding also coincided with Kaycee’s half birthday, a milestone often celebrated by terminally ill children.
Claire added: “People’s wishes and desires in life change all the time. Mine are always the same – to keep Kaycee with me. I want her to be here when there’s a cure, that’s the bottom line.”
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