On Monday evening, 5 year old Ollie Carroll and his family attended the WellChild Awards Ceremony in London to receive his award for Most Inspirational Child (aged 4-6) from HRH Prince Harry. Brave Ollie, who has CLN2 (Late Infantile Batten disease), summoned up the strength to stand and hug the Prince, resulting in pictures on the front pages of many national newspapers, appearances on national television and a campaign that went viral across social media.

Speaking at the 2016 WellChild Awards ceremony, Prince Harry said: “The stories we have heard tonight are moving beyond words. They remind us of the utter insignificance of our everyday worries. Yet, one of the things that always stands out is the positivity shown by those in the most difficult and testing circumstances. It is heartening to hear so many stories of happiness and hope, even through the dark times”

Lucy Carroll, Ollie’s mum, said after the event “We would like to say a massive thank you to WellChild for doing what they do for families like ours. We would also like to say a huge congratulations to all the winners – they are truly inspirational, brave children and adults. Ollie loved meeting Prince Harry. He is a truly lovely man who took the time to ask about both Ollie and Amelia. He then spoke to Ollie who decided he thought the prince needed a cuddle!”

Andrea West, Chief Executive of the BDFA added “Every day, most people we meet have never heard of Batten disease.  We are all so proud of Ollie and his family. They have made the nation aware of what this devastating disease means every day for UK families.  Their bravery has meant that today many more people know about this disease and brings our hope for a cure that bit closer”

Thank you Ollie, and all the Carroll family, for the amazing awareness you have raised of Batten disease