The Coronation Street storyline about Oliver Battersby and his harrowing death is raising awareness of Mitochondrial Disease, also known as Mito.
Entertainment Daily interviewed the founder and CEO of The Lily Foundation Liz Curtis, whose own daughter died of the disease.
The ITV soap worked closely with The Lily Foundation to ensure the script reflects the experiences of real families affected by Mitochondrial Disease.
What is Mitochondrial Disease?
We all have Mitochondria.
Mitochondria exist in nearly every cell of the human body.
It’s responsible for creating 90% of the energy you need to sustain life and support organ function.
Mito Disease is when Mitochondria cannot convert food and oxygen into life-sustaining energy.
Cell injury and even cell death follows, and organ systems can fail and stop functioning.
What is The Lily Foundation?
Liz Curtis set up The Lily Foundation in 2007, after her daughter tragically died of Mito Disease at eight months old.
The Lily Foundation raises money to fund world-leading Mito research.
The Lily Foundation is the UK’s leading Mitochondrial Disease charity.
Its mission is to improve the lives of people affected by Mitochondrial Disease.
What is Lily’s story?
Liz tells us that when her baby Lily was diagnosed at seven weeks old, she knew “nothing” about the disease.
She reveals: “She stopped breathing, and was admitted into hospital.
“She got really poorly after 10 days and had to be defibrillated, then was transferred to my local hospital where they told me it could be Mitochondrial Disease.
“That evening, Lily was transferred to London and put on life support.
“After a number of tests, including an MRI test and a biopsy, their suspicions were confirmed – it was Mito Disease.”
Why did Liz Fraser set up The Lily Foundation?
Liz tells us there were no other charities out there where she could get help.
She says: “Lily was on life support for five days and they didn’t think she would live for very long.
“We prepared ourselves to turn off her machine and say our goodbyes with our family.”
Luckily Lily started to breathe by herself and, after a few days, Liz and her family made the choice to go home with Lily.
She explains: “We had two other children who were two and three at the time. We decided to go home and have as much time as we could together.”
Lily survived for six months.
During those six months, Liz and her family started to look for other parents and treatments.
Liz says: “I don’t even know if we’d thought about setting up a charity until she passed away and there was nowhere to donate money to instead of flowers.
“So we used a bit of the money from the funeral to fund a bit of equipment at the hospital in Oxford and then the rest of it we used to set up a charity.”
Did people respond to the charity?
Liz tells us that the charity got a great response which was “odd” because they didn’t know anybody else who’d had Mitochondrial Disease in the UK.
She says: “I remember thinking ‘what are we doing?’ We know one child and she died. Who on earth is going to look at wanting to support us or invest in us or trust us?
“But we had great support from the doctors we worked with and a really clear mission of what we wanted to do and it just took off.”
How is BBC commentator Jonathan Pearce involved in The Lily Foundation?
Liz explains: “My brother-in-law is the BBC commentator Jonathan Pearce.
“He was very much behind setting up a charity and very involved in the process.
“As soon as people realised we had someone like him involved with his contacts, it was a game changer.
“We raised over £100,000 in the first year and our target was £25,000.
“And then Jonathan decided to get people involved, high profile people, and he did the London Marathon, which we got quite a lot of press coverage for.
“Doctors were coming our way and we had a website and people would just look at it and find us and we helped 900 families and patients in the UK – and they’re coming thick and fast.”
The Mitochondrial Disease storyline
Liz’s aim is to make Mitochondrial Disease a household name and welcomed the opportunity to work with Coronation Street on its Oliver Battersby storyline.
Liz explains that while Covid-19 has stopped them from visiting the set, The Lily Foundation has been very involved.
She says: “We sat down with producer Ian MacLeod right at the beginning and they talked us through their thoughts and what they wanted to do.
“We had an input and every script that has involved the storyline has come via us and the team.”
Is the Coronation Street storyline difficult to watch?
Liz says: “For many families it’s too painful to watch, they keep a track of press coverage and what’s going on, but the actual programme itself and the actual reactions is too painful for them.
“For us, there are parts of it that are really very difficult in the sense that it just feels like your life.
“That moment when you hear those initial words that there’s no cure, no treatment. They literally say your child is going to die and there’s nothing you can do.”
Is Corrie doing a good job of portraying Mitochondrial Disease?
She says: “Obviously there’s hundreds of different types of Mitochondrial Disease and I think it’s really important to get across the storyline can only cover one: one character and he has a Mitochondrial Disease which is real life to some people.
“It’s been really passionate and I’ve spoken with Jane Danson a lot and it’s really important to her to do it justice and she’s very aware of what it means to families.”
Has the Coronation Street Oliver storyline raised awareness?
“Yeah, absolutely,” says Liz. “Our website had a 400 per cent increase.
“Families phone me and contact me – one woman lost a son in 1986 and hadn’t spoken about it to anybody ever.”
Liz insists this is still a soap and Leanne is reacting her own way.
She says: “Leanne’s been so foul and I think that’s part of what I was trying to say earlier about remembering the character, who she is, because it’s not out of character for her to behave like this.
“I almost feel she’s saying all the things a parent may feel but doesn’t say. Because it’s a soap she can and she’s Leanne.
“It’s incredibly difficult for the wider family. Nobody knows what to say, there is nothing that anybody can do, there just isn’t.
“There’s nothing anyone can do. All Leanne wants to do is be with Oliver and be his mum and do the best she can, and I think that’s how you feel.
“I remember Lily’s funeral. I thought: ‘I’m her mum, I’ve got to talk, I’ve got to be here for her and be strong’. That was my way of coping.”
Liz insists “awareness needs to be huge” because Mitochondrial Disease is complex and affects many different organs.
She says: “It makes it very difficult to diagnose and there are a lot of people out there with undiagnosed conditions and what we want is doctors and GPs and consultants in local hospitals to start thinking: could this be?”
Is Leanne’s reaction realistic in Corrie?
Leanne wants to seize the day and Liz agrees this is advice she gives.
She says: “If your child is healthy and well at the moment, you have to take that opportunity of making the best.
“Although that’s hard, it also gives us the opportunity to do as much as we possibly can, make those memories.
“We did pretty much barricade ourselves in, but people came and made memories with Lily by holding her and meeting her.”
Show your support for the Lily Foundation and the many families this amazing charity helps – full details on their campaign page.
You can also follow their work and stories on the Lily Foundation website
Coronation Street airs on Mondays and Wednesdays 7.30pm and 8.30pm with an hour long episode at 7.30 on Fridays on ITV.
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