In the spirit of Christmas, we’d like to share the brave story of 7-year-old Addy from England. She 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 finds herself facing this tough reality.
Batten Disease has gradually taken away Addy’s ability to walk, talk, and eat. Her family watches as she weakens and hopes that this Christmas won’t be the last one they spend together.
Hayley, Addy’s loving mom from Swindon, describes the situation as being worse than any worst-case scenario she could have imagined. This festive season may be their last chance to celebrate with Addy. Seeing their daughter fade away is extremely difficult for the entire family.
Addy’s diagnosis came at the age of four after a series of seizures. “The disease erases every skill the children have ever learned,” Hayley shares. Batten Disease causes Addy’s brain to shrink as her body struggles to eliminate cellular waste.
The vibrant child they once knew is slowly slipping away, leaving them with the painful feeling that their precious daughter is no longer fully present. Hayley recalls her husband’s tears and the heart-wrenching realization that they may have to bury their own child.
Before her diagnosis, Addy was like any other four-year-old, enjoying scooter rides and building sandcastles with friends. One cherished memory of Addy making friends with a dog during a holiday still brings smiles to their faces.
Now, this resilient little girl has lost the ability to walk independently, eat on her own, and is gradually losing her eyesight. It is heart-wrenching for everyone who cares for her to witness these losses.
Addy’s family is currently raising funds for the local children’s hospice. Their goal is to create special moments for the children there while also providing support to families like theirs. This situation is incredibly heartbreaking, and the strength required by Addy’s friends and family throughout this journey is beyond comprehension.
As Christmas approaches, we sincerely hope that Addy and her parents find comfort in creating lasting memories together. May their love shine brightly and bring peace during this challenging time.
