Great Britain

My girl suffered from mitochondrial disease like Coronation Street’s Oliver — I can’t watch

IT is a harrowing storyline that demanded absolute authenticity.

As Corrie’s Oliver Battersby was diagnosed with an incurable disease, the soap’s bosses turned to the Lily Foundation, which works with real-life parents facing the turmoil of The Street’s heartbroken Leanne Battersby and Steve McDonald.

Anna and Steve Withers know just how realistic the long-running show’s storyline is.

They turned to the Lily Foundation when their daughter Charlie was diagnosed at just 18 months with mitochondrial disease, like Oliver.

And the charity helped them cope when Charlie died nine months later.

Anna, 36, told The Sun on Sunday: “I can’t watch it. I can’t watch somebody else go through what we went through for real.

“But it’s such an important storyline to raise awareness. We hadn’t heard of the condition when Charlie was diagnosed.

“They say it’s a rare disease but more children die from this than from childhood cancers.

“The charity helped us and they advised Coronation Street before they even started writing the scripts. They worked with ITV to give a realistic understanding of what it’s really like and how it affects families like us.

“Charlie’s death has left a hole that can never be filled. For the rest of our lives, something will be missing.

‘I always believed there would be a cure’

“We’ve never washed the clothes we were wearing and that she was wearing the day she died.

“I go to her room and smell her clothes. I still have her laundry basket with clothes in it and I can’t bring myself to wash them.

“I try to keep that physical connection to her.

“I’d never really been bothered by a career. I just wanted a family and to be a mum.

“When Charlie arrived in 2016 it was incredible.”

But the tot had difficulty feeding and things were no better when she was weaned on to solid food.

The family, from Yeovil, Somerset, were referred to dieticians.

But nobody suspected the problem could be serious until just before Charlie’s first birthday, when she became lethargic.

She was taken to Yeovil Hospital to see a paediatrician.

Anna says: “He came to the ward and said, ‘She looks OK. She doesn’t look malnourished. I think maybe she’s just a little person’.

“I screamed at him, ‘A little person would still eat. She doesn’t eat’.”

Tests revealed she had Leigh Syndrome, a severe type of mitochondrial disease that affects one in 40,000 newborns.

Anna says: “Charlie was sitting on my lap playing as the doctors told us and explained that it was life-limiting.

“We got into the car and I remember googling ‘life-limiting’ as Steve drove home.

“Shocked doesn’t come close to describing how we felt. We were just so numb.”

Six million Corrie viewers witnessed Leanne and Steve’s agony on Wednesday night as doctors said Oliver’s seizures were beyond their control, with life support the only thing keeping him alive.

Angry and in denial, Leanne sets about finding an overseas hospital that might be able to help.

Anna says: “We were the same. We thought, ‘What can we do? What they’re telling us can’t be the only answer’.

“I always believed I could get us through it and keep Charlie healthy and there would be a cure. I signed up to trials all across the world.”

Most children with the condition gain developmental skills, only to lose them again later.

Within weeks Charlie was deteriorating, losing her ability to sit up and speak.

'DEVASTATED'

Anna says: “It was utterly devastating but I wasn’t going to show Charlie how I was feeling. I said, ‘I’ve got the rest of my life to be sad that she died and to miss her, I’m not going to show her that while she’s alive’.

“I just wanted Charlie to have the best life she could and not be scared about why Mummy and Daddy were upset all the time.”

For nine months after the diagnosis, the couple were in and out of hospital.

The disease left Charlie unable to digest food, while breathing problems meant doctors had to insert a tube into her lung.

Anna, who works with autistic children, says: “There are things we have seen and done to our child you should never see. At one stage she was fitted with a feeding tube directly into her stomach. I remember collecting her from theatre and thinking, ‘My god, what have we done to our baby?’”

Charlie died on March 1, 2018.

GIFT FROM CHARLIE

‘Our new baby is a gift from Charlie’

Steve, 36, a civil engineer, says: “She’d had a terrible night. They gave her some morphine, took off her oxygen mask and we both lay in bed with her, holding her as she died.”

Both parents have had counselling, with therapists likening the effects of their experience to post-traumatic stress disorder, PTSD.

Two years on, their pain has not eased.

Anna says: “She should have started primary school this month.

“The hardest part is the loss of her potential — not seeing her become whatever she would have become. I would give anything to watch my child grow.”

The Lily Foundation has helped them get through the darkest days.

Anna says: “They were incredible. They gave us lots of emotional support and advice and put us in touch with local families in the same situation.

They even funded a hot tub to ease and strengthen Charlie’s muscles.”

The couple always hoped Charlie would have a brother or sister and for three years they had IVF. Then Anna got pregnant naturally four months ago.

There was a one-in-four chance any future children they conceived naturally would also have the syndrome.

That left an agonising 17-week wait for test results.

But this week they got the all-clear they so desperately wanted.

Anna says: “The wait has been horrendous but we’re completely overjoyed and relieved. Charlie will always be their big sister and this little person will know all about her.

“This baby is a gift from Charlie. There’s no doubt that she’s had a big hand in this.”


WHAT IS MITOCHONDRIAL DISEASE?

IT is caused by mutations in mitochondria – tiny structures in our cells that work to convert food into the energy we need to survive and grow.

If they fail to function properly, the body gradually powers down.

That leads to a range of potential problems which can include seizures, loss of vision and hearing, stunted growth, fatigue, cognitive disabilities and breathing problems.

It does affect adults but is typically more severe in youngsters and often life-limiting.

Find out more at thelilyfoundation.org.uk.

Coronation Street's Leanne Battersby sobs as she's advised to switch off son Oliver’s life support

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