A young girl is "fading in front of her parents' eyes" after being diagnosed with a rare disease.
Hayley and Dave Clarke's daughter Addy was diagnosed with a rare disease called Batten Disease which is also known as childhood dementia. The family, supported by a children's hospice, fear this could be their last Christmas with the seven-year-old.
Hayley, from Swindon, said the illness, which affects only about 30 in the UK with around five children diagnosed each year, "felt worse than the worst-case scenario". She added: "We are acutely aware this Christmas is probably going to be the last one Addy can see. Our daughter is fading in front of our eyes."
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The disease is terminal and without medical advances, Addy sadly isn’t expected to reach her 10th birthday. Hayley, said the family "don't know what's around the corner".
She said: "We don't know what next month will hold, what next year will hold. So we are just trying to live and make the most of what's in our lap at this point."
The family found out that Addy had Batten disease when she was four years old, after she began to have seizures. Before then Addy had been like any other healthy little girl her age, full of energy and happiest whizzing around on her scooter or building sandcastles.
Now, she has lost the ability to eat and walk independently and is beginning to go blind. While she still loves to laugh, in a short time Addy will completely lose all her mobility and cognitive skills.
Hayley added: "The disease steals every skill the children have ever learned. In effect, her brain is shrinking from the body's ineffectiveness of being able to get rid of cell waste.
“This horrible disease has stolen the Addy we knew. It feels like the little girl in the photos on my wall is not my child anymore.
"I remember my husband dissolving into tears and saying we're going to have to bury our daughter."
They have been telling their story as part of the Christmas appeal for the hospice charity who they say have been a huge support. This Christmas, Wiltshire and Dorset children’s hospice, Julia’s House, is appealing for donations to help make magical memories and provide vital respite to families like Addy’s.
Dad Dave said: "I remember going back home and I couldn't look at her, because within those words everything changed."
The hospice allows Addy's parents to have some respite, and also helps her older brother Samuel. You can donate to the cause here.
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