In the spirit of Christmas, we share the courageous journey of 7-year-old Addy from England, who is bravely fighting Batten Disease, a rare illness often referred to as childhood dementia. Each year, only five children in the UK are diagnosed with this debilitating condition, and unfortunately, Addy is among them.
The Impact of Batten Disease
Batten Disease has gradually robbed Addy of her ability to walk, talk, and eat. As her family witnesses her decline, they cling to the hope that this Christmas will not be their last together. Hayley, Addy’s devoted mother from Swindon, describes their situation as worse than any worst-case scenario. The prospect of this festive season being their final celebration with Addy weighs heavily on their hearts, making the emotional burden all the more profound.
A Heartbreaking Diagnosis
Addy was diagnosed at just four years old after suffering a series of seizures. “The disease erases every skill the children have ever learned,” Hayley explains. Batten Disease causes Addy’s brain to shrink as her body struggles to eliminate cellular waste, resulting in the loss of the vibrant child they once knew. This painful reality leaves them with a sense of mourning for the precious child they feel is slipping away. Hayley recalls her husband’s tears as he confronts the heartbreaking possibility of having to bury their daughter.
Cherished Childhood Memories
Before her diagnosis, Addy was a typical four-year-old, enjoying scooter rides and building sandcastles with her friends. One particularly cherished memory is of Addy making a connection with a dog during a family holiday, a moment that still brings smiles to their faces amidst the sadness.
A Commitment to Helping Others
Currently, Addy’s family is actively raising funds for a local children’s hospice, with the goal of creating special moments for the children there and supporting families facing similar challenges. The strength demonstrated by Addy’s friends and family throughout this journey is truly inspiring, highlighting the resilience of the human spirit.
As Christmas approaches, we sincerely hope that Addy and her parents can find comfort in creating lasting memories together. May their love shine brightly, providing solace during this challenging time and reminding us all of the importance of cherishing every moment.
