Family hits the streets with a blaze of colour
THE streets of a town were turned into a sea of orange and blue as the community raised awareness of a rare condition.
Ollie and Amelia Carroll, nine and seven, from Poynton, both have genetic condition Late Infantile Batten Disease.
And for International Batten Disease Awareness Day on Tuesday, June 9, they and their family - helped by hundreds of people decorated the town to mark the occasion.
Balloons, posters and banners were put on businesses, homes and at other locations - orange as it is the colour of Batten Disease and blue as a simultaneous thank you to key workers.
Mum Lucy Carroll, 35, said: “It was harder to organise than last year as businesses are not open like normal but people are really supportive.
”And because children are off school a lot were involved making posters and decorating houses. The whole of Poynton was a sea of orange and blue, it was incredible to see.”
Celebrities including Liverpool football Andy Robertson and actor Sue Johnston, who have both previously supported the family, and Holly Willoughby joined the cause by wearing orange.
And locally Mayor of Poynton Lee Podmore, Greater Manchester Mayor Andy Burnham and Macclesfield MP David Rutley did likewise.
Batten Disease causes the loss of speech, mobility and eyesight over time and drastically lowers life expectancy.
But the siblings are receiving treatment, which means although Ollie has many of the symptoms he is stable.
And Amelia, who received the treatment earlier, can still walk, talk and attend school like any other child.
They live with Lucy, dad Mike, brothers Danny and Mickey, 13 and 12, and baby sister Renesmee, five months.
Lucy said: “Amelia has proved with an early diagnosis and early treatment there is a better outcome.
”It is important to raise awareness of this ultra rare disease with parents and professionals as the initial symptoms of speech delay and clumsiness are very general. It’s also good to bring parents in the Batten community together so they don’t feel so isolated.”