This Christmas will likely be the very last for seven-year-old Addy. She suffers from the rare disease Batten and is starting to forget how to walk, eat, and talk.
“Our daughter is fading before our eyes,” says her mother Hayley to the Daily Mirror.
Every year, five British children are diagnosed with Batten’s disease, also known as ‘childhood dementia‘. One of those affected by the disease is 7-year-old Addy.
Her family is reluctantly witnessing their little daughter waste away before their eyes, and they fear that this may be their last Christmas together. They are now receiving support from a children’s hospice.
Can no longer walk or eat
Mother Hayley shared that her young daughter’s disease “felt worse than the worst-case scenario.” Meanwhile, she and her husband Dave are forced to watch helplessly as their daughter’s abilities gradually diminish.
The girl can barely walk or eat on her own. Furthermore, she is losing her eyesight. Her mobility is worsening.
Addy’s mother said, “We are acutely aware that this Christmas is likely to be the last that Addy can see. Our daughter is fading before our eyes.”
The family discovered that Addy had Batten’s disease when she was just four years old, after a series of seizures.
“The disease steals every skill the children have ever learned. In fact, her brain is shrinking because her body cannot rid itself of cell waste,” says her mother Hayley.
‘We have to bury our daughter’
“This terrible disease has stolen the Addy we knew. It feels like the little girl in the photos on my wall is no longer my child. I remember my husband bursting into tears and saying we have to bury our daughter,” she added.
Before getting Batten’s disease, Addy was like any other four-year-old. Full of energy, riding her scooter, and building sandcastles in the park.
Now, the family is trying to raise money for the local children’s hospice. The idea is that with the funds raised before Christmas, they can create unforgettable memories for the children and provide some relief to families like Addy’s.
So incredibly tragic! What a nightmare for the whole family.
We hope Addy has a lovely Christmas with her parents and her brother Samuel, and that they can create many beautiful memories together.
