Saturday 28th September is the first Batten Fighters Forever ‘Sassy Walk’ marking the birthday of Annabelle Hover, who lost her brave battle with Batten Disease in January this year. Starting at Christ Church, Creekmoor following the Castleman Trailway for 18 miles to The Elm Tree, Ringwood.
Aiming to raise £7,000, fifty walkers made up of friends and family of the music-loving, fun-loving and very sassy 18-year-old, have signed up for the eighteen mile walk along the disused Castleman railway line to raise valuable funds and awareness of this little known, devastating disease.
Mum, Lisa Hover explains “In August 2016, after rapidly losing her sight, followed by years bouncing from one hospital to another to find an explanation, Annabelle was diagnosed with CLN3 Juvenile Batten Disease - one form of a rare inherited condition affecting the nervous system. Beginning in childhood, it causes rapid vision loss, seizures, thinking difficulties, loss of speech, loss of movement and premature death.”
Funds raised by the event will help the Batten Fighters Forever charity continue to support other families and their children. The charity was the inspiration of Annabelle who came up with the name and ‘BFF’ acronym mirroring the BFF - Best Friends Forever used by teenagers on social media. Run by Andy, Lisa, and a team of Trustees, Batten Fighters Forever has so far supported over thirty children with equipment and adaptations to aid their care.
Heartbreakingly, Annabelle’s brother has also been diagnosed with CLN3 for which there is currently no cure. But, like his inspiring mum and dad he is excited to remember his ‘sassy’ sister with this the first Sassy Walk. There will be a prize for ‘sassiest’ costume with birthday
celebrations including a BBQ and live music. More about Batten Disease visit www.battenfightersforever.com
01425 472516
info@elmtreeringwood.co.uk
events@elmtreeringwood.co.uk
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