In the spirit of Christmas, we’d like to share the brave story of 7-year-old Addy from England. Addy has a rare illness called Batten Disease, also known as childhood dementia. While only five children in the UK are diagnosed with this disease each year, Addy unfortunately finds herself amidst this struggle.
Batten Disease has slowly taken away Addy’s ability to walk, talk, and eat. As her family witnesses her weakening, they hold on to the hope that this Christmas won’t be the last one they get to spend with her.
Hayley, Addy’s loving mom in Swindon, describes the situation as even worse than any worst-case scenario. This festive season may be the final time they can truly celebrate with Addy. Witnessing their daughter fade away is incredibly difficult for the entire family.
Addy’s diagnosis came at the tender age of four, following a series of seizures. “The disease erases every skill the children have ever learned,” Hayley shares. Simply put, Batten Disease causes Addy’s brain to shrink as her body struggles to eliminate cellular waste. The Addy they once knew has been slowly slipping away, leaving them with a feeling that their precious child is no longer present. Hayley recalls her husband’s tears and his heartbreaking realization that they may have to bury their own daughter.
Before her diagnosis, Addy was like any other four-year-old, enjoying scooter rides and building sandcastles with her friends. A cherished memory of Addy making friends with a dog during a holiday brings a smile to their faces.
Today, this resilient little girl has lost the ability to walk independently, eat on her own, and is gradually losing her eyesight. Watching her lose these essential functions is heart-wrenching for everyone who cares for her.
Currently, Addy’s family is raising funds for the local children’s hospice. Their aim is to create special moments for the children there, while also providing support to families like theirs. It’s an incredibly heartbreaking situation. We cannot fathom the strength required by Addy’s friends and family throughout this journey.
As Christmas approaches, we wholeheartedly hope that Addy and her parents can find solace in creating lasting memories together. May their love shine brightly and bring comfort in this challenging time.