Effie has a rare genetic condition that has caused her to suffer from the disease, and her parents have opened up about their heartbreaking reality.
Speaking to the Sunday People, mum Emma, 34, said: “Piece by piece, we lose a little bit more of Effie every single day. Seeing her with this disease is like one long, painful goodbye.”
In January 2014 Effie was officially diagnosed with Batten Disease, but the signs began showing when she was just two-years-old.
Our Effie, just after her 2nd birthday. Completely healthy and perfect in every way. Beautiful princess xxx > >
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Emma revealed that, just before she turned three, Effie stopped walking. She added: “From there she just went downhill. She would forget that she couldn’t walk, would just off a chair and fall on the floor.”
Tragically, when Effie was diagnosed Emma and husband Paul, 38, were told their little girl had only years to live.
Effie’s rare condition is caused by damaged cells and, as well as the early dementia, it causes her to suffer from visual impairment, seizures and the loss of the ability to walk, talk and communicate.
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“We received the devastating news that she has Late Infantile Batten Disease which has life expectancy of five to 12 years,” Emma told the Wisbech Standard.
“We are living on our savings and on the never ending and fantastic support of our parents.”
She added: “I have no idea how we cope or how anyone copes with an ill child. You just do because you have to. It is a day at a time.”
You can follow Effie’s journey here.