We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie’s Army Battling Against Battens for your amazing efforts in raising awareness and fundraising.
For many parents, life’s simplest joys are found in watching their children grow step by small step. For Mike and Lucy Carroll, however, those steps are being made heartbreakingly in reverse.
Their five-year-old son Ollie has late infantile Batten disease, a rare genetic disorder that is robbing him of his ability to talk, walk, play, see and swallow. ‘Every day, I notice something new: this morning I realised he was leaning a few degrees more to the right because his control of his body is weakening,’ says Lucy.
There is no cure for Batten disease and, devastatingly, the Carrolls have been told that Ollie is unlikely to survive beyond the age of 12.
‘Ollie doesn’t understand why his legs won’t do what he wants them to do and why, when he opens his mouth to speak, no words come out,’ Lucy explains. ‘But he still has a smile that lights up the room and he reaches over to wipe away my tears if he catches me crying. He’s my inspiration and my strength.’
Ollie was nominated for a WellChild Award, supported by GSK, by his parents, relatives and friends who attest to his astonishing spirit and determination despite the odds stacked against him.