This Christmas will likely be the last for 7-year-old Addy. She is suffering from the rare disease Batten and has started to forget how to walk, eat, and speak.
‘Our daughter is disappearing before our eyes,’ said her mother Hayley, according to the Daily Mirror.
Each year, five British children are diagnosed with Batten disease, also known as ‘childhood dementia.’ One of those afflicted by this condition is Addy, 7 years old.
Her family is now forced to watch their little girl fade away before their eyes and fears that this may be their last Christmas together. They are receiving support from a children’s hospice.
She can no longer walk or eat
Mother Hayley from Swindon says her daughter’s disease ‘seems worse than the worst-case scenario.’ She and her husband Dave witness Addy’s abilities deteriorate gradually.
The young girl can barely walk or feed herself. She is also losing her sight, and her mobility is declining.
‘We are very aware that this Christmas will likely be the last that Addy can experience. Our daughter is disappearing before our eyes,’ she said, according to the Daily Mirror.
The family discovered their daughter’s disease when she was only four years old, experiencing several epileptic seizures. Doctors believe Addy won’t live to see her tenth birthday.
‘The disease robs children of all the skills they’ve acquired. In fact, her brain is shrinking due to her body’s inability to dispose of cellular waste,’ explains her mother Hayley.
Need to bury our daughter
This terrible disease has stolen the Addy we knew. I feel like the little girl in the photos hanging on my wall is no longer my child. I remember my husband broke down in tears and told me that we would have to bury our daughter,” she continues.
When you’re on holiday and staying with amazing friends who have a dog…..Addy and Jenkins are now best of friends….
Posted by Addy’s Batten Adventure on Wednesday, August 9, 2023
Before Addy was affected by Batten disease, she was like any other four-year-old child. She was full of energy, rode a scooter, and built sandcastles in the park.
Today, the family is trying to raise funds for the local children’s hospice. The idea is that the money collected as Christmas approaches will be used to create unforgettable memories for the children and provide relief for families like Addy’s.
It’s incredibly tragic! What a nightmare for the entire family!
We hope Addy will have a wonderful Christmas with her parents and her brother Samuel and that they will create many cherished memories together.
