In recent weeks, we’ve all watched the hugely emotional story of Leanne Battersby (Jane Danson) coming to terms with her son Oliver’s illness on Coronation Street.
He was suffering from seizures which were not only distressing for everyone, but would eventually go on to have an impact on his health.
There is a wider explanation for his mysterious illness: Mitochondrial Disease. The life-limiting and eventually fatal illness sees mutations in a person’s mitochondria, tiny organelles which generate energy in our cells which we need to live. What’s more, it can affect any organ in the body which makes diagnosing the disease very difficult.
Liz Curtis, from The Lily Foundation, knows the frustrations behind the disease all too well. The charity’s CEO sadly lost her daughter Lily at just eight-months-old in 2007.
Speaking exclusively to RadioTimes.com, Curtis told us: “I set The Lily Foundation up with a couple of my family and Lily was my daughter, she was diagnosed in seven weeks and she was on life support at the time. We were told she wasn’t going to get any better. The only option was for her to come off life support and see what would happen.”
Curtis and her family decided to bring Lily home to be with her other two children as a family and despite the odds, little Lily survived for six months. But it was during that time, Curtis realised there needed to be more support and information for families going through the same thing.
“Everything on the internet was written really for doctors and by doctors and there was no support network. There were a few support groups in America but it felt very far away. We didn’t know anyone in the UK who had a child who had Mitochondial Disease. I knew there were people because my doctors knew people, but there was no way of getting in touch with them and no network because of obviously data protection.
“We travelled our journey on our own and when Lily died, people wanted to do something and donate. It was after the funeral we thought we’d do something. After she died we put our energy into it and set up the charity. That’s it, haven’t really looked back.”
The Lily Foundation not only raises vital money for research, but also helps to raise public awareness of the disease and provide essential support for patients, their families and carers.
Now, Mitochondrial Disease and the families who have their lives turned upside down by it are finally being recognised in Coronation Street. Oliver Battersby will be confirmed to have the fatal illness following several seizures and it’s been hinted by boss Iain MacLeod that the child won’t make it.
Curtis and The Lily Foundation helped with the formation of the important storyline, even sitting down with lead actress Jane Danson to offer some guidance.
“I spoke about my experiences and they’re getting the medical side of the storyline from the medical experts,” Curtis explained. “But I just spoke to Jane about my experiences of being told really crappy news. ‘Your child has this, there’s no treatment and they’re going to die,’ and you’re like, ‘Oh, what do you mean?’
“Everyone’s very different and I could only tell my experiences. I think as a whole working with other patients, there’s frustration of people not knowing and not understanding, and they can’t even be bothered to learn how to pronounce Mitochondrial. You’ll be in the supermarket and people will be like, ‘Oh she’ll be alright won’t she?’ and you say, ‘No she won’t be.’ Those frustrations would have been helpful to [Danson],” the charity founder said.
Curtis also detailed how sometimes Mitochondrial Disease can take a long time to diagnose, given the complications and ambiguity surrounding some of the symptoms, but that process has been quickened on Coronation Street. “Often the more severe the illness the quicker the diagnosis. Oliver is poorly and in intensive care and in real life, that would mean investigations are done a lot quicker.”
Thankfully for Curtis and her dedicated team, the message is finally getting out there and more people are becoming aware of the brutal disease.
The Lily Foundation has seen a 400 per cent increase in visits to the website from April to May and that is in doubt thanks to the marvellous work Coronation Street are doing on screen, something Curtis describes as “hugely important” to the team.
But off-screen, there are plenty of ways members of the public can help the charity, from online quizzes with Jane Danson, to My Mito Miles where you can make a pledge to do some exercise and donate miles with the aim being to accumulate 24,901 miles (the circumnavigation of the world) by the 19th September. Full details of how to donate to The Lily Foundation can be found here.