A Young Life’s Struggle: Coping with Childhood Dementia

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This Christmas will likely be the very last one for 7-year-old Addy, a little girl from England. She has a rare illness called Batten Disease, also known as childhood dementia. Only five children in the UK get this disease every year, and sadly, Addy is one of them.

Batten Disease is making Addy forget how to walk, talk, and eat. Her family is really sad to see her getting weaker, and they worry that this Christmas might be the last one they can spend with her.

Addy’s mom, Haley, who lives in Swindon, says it feels even worse than the worst-case scenario. She knows that this Christmas might be the last one Addy can enjoy. They can see their daughter fading away, and it’s very hard for them.

Addy’s sickness was found when she was only four years old, and it happened after she had a lot of seizures.

Hayley, Addy’s mom, said, “The disease takes away every skill the children have ever learned.” In simpler terms, Addy’s brain is getting smaller because her body can’t get rid of cell waste properly. This terrible disease has taken away the Addy they knew. It feels like the little girl they see in pictures on the wall is not their child anymore. Hayley remembers her husband crying and saying they might have to bury their daughter.

Before Addy got this sad diagnosis, she was just like any other four-year-old. She loved riding her scooter and building sandcastles, just like the other kids. There’s a picture of Addy being friends with a dog during a holiday. It’s a happy memory for them.

Now, this poor little girl has lost the ability to eat and walk on her own. She’s also starting to go blind. It’s really sad because soon she’ll lose all her ability to move and think, which is very hard for the people who care about her to see.

Right now, her family is trying to collect money for the local children’s hospice. They want to use the money to create special memories for the kids there and offer support to families like Addy’s. It’s a very sad situation! I can’t even imagine how tough it must be for Addy’s friends and family.

We really hope that this brave little girl has a wonderful Christmas with her parents and that they can make some lasting memories together.