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WHA T AN INSPIRATION!
The WellChild Awards on 3 October will celebrate the extraordinary courage of children – and their caring siblings – who live with health challenges. Catherine O’Brien meets four of this year’s winners whose stories moved the judges and the charity’s patr
Ahead of this year’s glittering ceremony, hosted by Prince Harry, we meet theoufr ermarkable winners of the 2016 eWllChild Awards
OLLIE CARROLL, 5
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.
For builder Mike, 32, and Lucy, a 31-year- old former nursery nurse, the first signs that their third son was unwell were barely perceptible. Like his brothers Danny, nine, and Micky, eight, and younger sister
Amelia, three, Ollie was born healthy and reached all the normal milestones. But shortly after his second birthday, he developed a speech delay. He also began to fall over, ‘Although within seconds, he would pick himself up and be running again,’ recalls Lucy.
At the age of two-and-a-half, Ollie had his first seizure in the bath and was taken to hospital by ambulance. Doctors thought he might have suffered a febrile convulsion due to an infection, but more seizures followed. He was initially diagnosed with epilepsy and then – after scans and a series of genetic tests – came the hammer-blow news that he had Batten disease. ‘We were told there was no treatment and no cure,’ says Lucy. ‘It seemed beyond belief that our little boy was going to be taken from us in the cruellest way imaginable.’
Ollie is one of only an estimated 30 to 60 children in the UK to suffer from his particular strain of Batten disease – an illness caused by a mutated gene when both parents are carriers. After Ollie’s diagnosis, tests on Mike and Lucy showed that they were indeed carriers, which means their children have a one-in-four chance of developing the condition. While Danny and Micky’s tests have come back clear, tests on Amelia have shown that she, too, will develop the disease; although, as yet, she is showing no symptoms. ‘It feels like she is a time bomb and it is just horrendous,’ says Lucy. ‘People ask us, “How do you cope?” And the answer is that we live for each precious day. But we are also working hard to help scientists find a cure so that other families like ours won’t have to suffer in the future.’
Lucy and Mike travel regularly with Ollie to London so that he can take part in research trials. Meanwhile, at their home in Poynton, Cheshire, the family has set up a website and Facebook page called Ollie’s Army and raised thousands of pounds for the Batten Disease Family Association.
Ollie is no longer able to play football with his brothers or sing along to his favourite Ed Sheeran songs. His eyesight is deteriorating and nerve damage is affecting his hand grip. ‘But he is going to school, which he loves, and no one comes into our house without receiving a thumbs up and high five from Ollie,’ says Lucy. ‘Inside, he is still the happy chappy he always was and his big blue eyes speak a million words. He’s the reason I get up in the mornings. Nominating him for a WellChild Award has been one way of letting him know how proud I am to be his mummy.’