In this episode, Lisa Hover shares her family's poignant journey as her daughter Annabelle bravely faces Batten disease. Lisa recounts the devastating moment of diagnosis and how it led to Annabelle's inspiring charity, Batten Fighters Forever. Their story is one of resilience, featuring Annabelle's determination to experience life fully, from skiing to pursuing Girl Guiding. Lisa highlights the family's emotional highs and lows, including the cherished dream of a White Christmas, capturing the essence of hope and love in adversity.
Annabelle's diagnosis of Batten disease transformed her family's outlook on life, motivating them to advocate for awareness and support for others affected by the condition.
Despite her deteriorating health, Annabelle embraced life fully by engaging in various activities and creating cherished memories with her family, including a memorable last Christmas.
Deep dives
Annabelle's Journey with Macular Degeneration
Annabelle was diagnosed with macular degeneration at a young age, which led to her losing her eyesight by the age of ten. Initially, the diagnosis was surprising for her family as it is typically associated with older adults. Annabelle showed remarkable resilience throughout her challenges; despite her progressive blindness, she not only excelled academically but also adapted by learning braille quickly. Her determination shone through as she engaged in various activities such as skiing and girl guiding, showcasing her positive attitude and ability to overcome obstacles.
The Impact of Batten Disease
After experiencing rapid deterioration in vision, further testing revealed that Annabelle had juvenile Batten disease, a rare genetic disorder with severe neurodegenerative consequences. This diagnosis brought an array of emotional challenges to the family, particularly when they discovered that Annabelle's younger brother, Robbie, also inherited the condition. The revelation led Annabelle to transition from a state of self-pity to a proactive stance in raising awareness about the disease. Determined to make a difference, she and her family founded a charity aimed at supporting others affected by Batten disease and advocating for research.
Cherishing Memories and Facing Loss
As Annabelle's health declined, she remained spirited and continued to create cherished memories with her family, including a remarkable last Christmas spent in France. Despite the increasing severity of her symptoms, Annabelle engaged in meaningful experiences such as writing for a magazine about her condition and embracing her love for fashion design. Tragically, she passed away during an unexpected seizure, leaving her family to navigate the profound grief while celebrating her inspiring legacy. The family found solace in honoring Annabelle's memory through campaigns, activities, and support for others dealing with similar challenges.
For Lisa Hover and her husband Andy, life on the Hampshire Dorset border with their family of four children seemed idyllic. Even when a routine sight test on their daughter Annabelle as she started Primary school picked up an abnormality it all seemed manageable. But the abnormality turned out to be macular degeneration and early sight loss, which itself masked a more severe and life shortening genetic condition.
The diagnosis of Batten disease changed everything. And yet, with no cure available, and physical and mental decline forecast, Annabelle lead the family in demanding everything from her limited life span. That included setting up a charity, Batten fighters forever or BFF ( battenfightersforever.com ), continuing her Girl Guiding and going skiing.
Lisa talks to Sian about the challenges, the joys and the sadness - and particularly about Annabelle's desire to have a White Christmas will all the family.
Producer; Tom Alban
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