In this season of love and joy, we are honored to share the profoundly inspiring story of 7-year-old Addy from England. Addy is a brave young girl who is battling a rare illness known as Batten Disease, also referred to as childhood dementia. Although this condition only affects a handful of children in the UK each year, Addy unfortunately finds herself in the midst of this challenging struggle.
Batten Disease has gradually robbed Addy of her ability to walk, talk, and eat. As her family watches her strength fade, they cling to the hope that this Christmas won’t be their last chance to celebrate with their beloved daughter.
Hayley, Addy’s loving mother from Swindon, describes the situation as worse than any worst-case scenario. This festive season could potentially be their final opportunity to truly rejoice with Addy. Witnessing their daughter slip away day by day is an unimaginably difficult experience for the entire family, filling their hearts with immense sadness.
Addy’s diagnosis came when she was just four years old, after experiencing a series of seizures. “The disease erases every skill the children have ever learned,” Hayley shares. In simple terms, Batten Disease causes Addy’s brain to shrink, while her body struggles to eliminate cellular waste. The vibrant and lively Addy they once knew has been slowly fading away, leaving her family with a profound sense of loss. Hayley remembers her husband’s tears and how his heart broke when he realized they might be forced to bury their own daughter.
Before her diagnosis, Addy lived life like any other four-year-old, cherishing moments of joy such as scooter rides and building sandcastles with her friends. One particularly cherished memory is the day when Addy forged a beautiful friendship with a dog while on a holiday, a memory that still brings a warm smile to her family’s faces.
Today, this resilient little girl has lost the ability to walk independently, eat on her own, and is slowly losing her eyesight. Witnessing her lose these fundamental functions is an indescribable anguish for everyone who cares for her.
Currently, Addy’s family is actively raising funds for their local children’s hospice. Their noble aim is to create special moments and lasting memories for not only Addy, but also for other children in similar situations, all while providing the necessary support and comfort to families like theirs. The strength and courage displayed by Addy’s friends and family throughout this journey is truly awe-inspiring and beyond comprehension.
As Christmas approaches, our hearts are filled with genuine hope, wishing that Addy and her parents can find solace in creating precious and everlasting memories together. May their love shine brightly, providing them with the strength and comfort they need during this challenging time.
