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Tuesday 23 June 2020

Jane Danson interview: Oliver's disease diagnosis

How do they feel when they get the diagnosis of Mitochondrial disease?

When they get the diagnosis it’s just so hard for them to get their heads round. This has come out of nowhere, a few weeks ago Oliver was fine and developing like any other three year old, now he seems to be regressing. When they’re told about mitochondrial disease that’s when it really hits home. 

Does Leanne accept what the doctors are saying?

Leanne wants a second opinion, other people try to point out they’ve had that from the hospital but she won’t take no for an answer, she wants to try a different hospital. It puts a massive strain on the people around her who aren’t necessarily agreeing with what she’s saying. There’s only so much softly softly you can offer a person before you have to give them the cold hard facts.

How does Leanne try to remain strong for Oliver?

She tries to remain in control, she takes on the mantle of saying he’s my son, I’ll deal with this and she really puts up the barriers. Everyone around her is trying to help but they all become punch bags for her emotion. There’s an element of denial to a point but then once there’s some acceptance she decides Oliver needs her and no-one else. She shuts down to everyone else for a period and everyone is walking on eggshells around her. She can be quite angry and harsh with people but at the same time I think it’s understandable because of the hell she’s going through. 

How important is it to raise awareness of mitochondrial disorders?

It’s not a very talked about disease or one which people know a lot about but it does affect families with children with these conditions. I imagine it will provoke a mixed reaction, having said that if we look at the broader picture it is thought provoking and it is someone’s story. It happens more than it should so if we can get some awareness out there for those families and get some more funding into research then that can only be a positive.

What research have you and team done into this storyline?

We’ve worked closely with Liz Curtis at The Lily Foundation. It was harrowing hearing the story of what happened to her daughter Lily but also really amazing to hear how people come through this, how they support each other and learn to live again. It’s almost too much to comprehend but I came away from the meeting bowled over by her bravery and how amazing she is as a human being. She shared with me how she felt emotionally, how she got through her days, how people rallied around her. I’ve also read a lot of literature about how families cope around their children’s diagnosis with life limiting illnesses, looking at the human elements to their stories amidst all the medical speak and hoping I can get it right. It is quite overwhelming, I’ve been so lucky to have so many stories with Leanne over the last 20 odd years but this one feels different, this one could really break her and it feels like it’s the one where I’ve got the most responsibility to get it right. 

Have you found it hard to film?

I’ve been amazed by the little boys who play Oliver, the twins Jermiah and Emmanuel are only 3 and they’ve been unbelievable. They’ve done everything they’ve been asked, they’ve had medical equipment stuck to them, they’ve had to lay down in a hospital bed and be still and that’s really tough for a 3 year old. We’ve also got a body double George who’s older but quite small and he’s been an absolute star as well. Because they’ve been so brilliant and the scripts have been so heartbreaking, it’s not been hard to find the emotion. So has it been hard to film emotionally, yes, the subject matter is harrowing so that’s tough, as a mum you can put yourself in that situation. But has it been hard to get there, no, because the scripts are so truthful and our little boys have done what they needed to do so well that it’s made my job a lot easier.

Glenda Young
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