‘Superstar’ Nottingham mum who cares for her identical twins is shortlisted for a national award

Sarah Finney, 52, from Nottingham is devoted to her disabled identical twin sons, Louie and Freddie Dawkins, who against all odds have just celebrated their 20th birthdays with a family party, games and cake.

For Sarah, every moment she spends with her sons is precious. Aged three, they both suddenly lost their sight. At four, they were diagnosed with Batten Disease variant CLN5 – a degenerative genetic condition, so rare only one or two children in the UK are diagnosed with it each year - and were given a life expectancy of just 14.

Sarah believes a groundbreaking trial drug the twins began taking aged 12, along with an expert health care and physio team, has helped them shatter that devastating expectation and live life to the full.

And the mum, whose constant love and caregiving is being celebrated at this year’s Sense Awards run by the national disability charity Sense, is now daring to dream about hiring a band for Louie and Freddie’s 21st birthday party in September 2026.

The identical twins have met the same health setbacks almost in tandem, losing their ability to see, then eat, then walk at the same time - but they also share a love of music, particularly Bob Marley.

Listening to Bob soothed the twins in the supermarket when they were little. Attending an Olly Murs concert when they were aged seven got Freddie smiling again, for the first time in more than three years after he’d lost his vision.

Sarah has supported her grown-up sons to keep enjoying their music by signing them up to Sense online music sessions. They also love taking part in a resonance board group, which allows them to feel the vibrations of sounds, and Zoom drumming classes run by the charity.

The twins attend a local college too, where they can enjoy adaptive sports and socialising with other young disabled adults. They live half the time with Sarah and half with their dad, from whom she separated in 2018.

Seeing Freddie and Louie thrive brings Sarah huge happiness but she admits caring for her boys also takes up huge amounts of her energy and can be exhausting, especially if one of them is unwell or in hospital.

A former nurse on an orthopaedic ward, she gave up her job to help them live life to the full and co-ordinate their 24-hour medical needs. Sometimes, this has involved fiercely advocating for them to make sure they get the medical treatments they need and Sarah says her sons have given her a strength she didn’t know she had.

Sarah Finney said: “I was totally blown away to be shortlisted for Family Carer of the Year at the Sense Awards. When I first heard, I had to sit down and had some tears. My mum, who was with me at the time, said I deserved to be nominated with everything I do but I just feel I do all this because of my absolute love for my amazing sons, Louie and Freddie.

“Being shortlisted has really uplifted me but it’s taken a while to sink in. It’s made me think of all the amazing times but also the really tough times we’ve been through together.

“When you’re looking after two of them, it’s a lot of juggling. If one gets ill for example, I whizz between hospital and home to get the other to college because I have to make sure one doesn’t miss out because the other is unwell. Normally all my focus is on the lads and I do this and that – and then I’m shattered. When I sit back and take a minute, I think ‘How the heck do I do that?’

“And because Freddie and Louie are identical, Battens has affected them in tandem. With their vision when they were three, one started having wobbly eyes and suddenly tripping over things and then, two weeks later, it happened with the other one.

“That was a horrendous time. They were petrified when they were losing their vision and would cling to me, they wouldn’t leave me, it was so traumatic for them. For Freddie, he didn’t smile for three years. We tried everything to get him to smile, it was horrible.

“But then there are the good times. Like the night we took the boys to a live Olly Murs concert when they were about seven, and they were dancing and Freddie started smiling again. It was like the music brought him back to life.

“Now music is a massive part of their life. We always have some on and they love their Sense online music and drumming classes.

“For their 18th birthday - which was very emotional because we were told at diagnosis that 14 would probably be their maximum age - we had a Bob Marley cake. They had some through their feeding tubes so they didn’t miss out. Now I’ve even started to think about their 21st and am wondering, ‘Should we get a band?’

“Of course, I never know when one could pass away and we’ve had close shaves with both of them, when they’ve been very, very poorly. In the winter of 2023, Freddie was in intensive care for three months and I had to fight for him to have a tracheostomy and be given a breathing tube when some doctors wanted to give up on him.

“I found the strength from somewhere to speak up for my son and explain he has friends at college and all his family love him and he has a great quality of life. Now he’s doing so well. Both my boys are so amazing and brave and resilient and every moment I have with them is a blessing.

“That’s the thing about being a family carer – you find strength you never knew you had. I hope me being shortlisted for this Award and speaking out about it will help highlight what family carers do behind the scenes. You do so much because you absolutely love your relative.”

Pamela Fitton, an MSI Consultant with Sense who works closely with Freddie and Louie, said: “Sarah is an absolute superstar and her dedication to looking after Louie and Freddie and advocating for their unique needs is unwavering. She always puts her boys first, even though that means having no time left for her own needs.

“We’re so proud to see Sarah shortlisted for ‘Family Carer of the Year’ at the Sense Awards and to celebrate everything she does and achieves, all because she loves her sons.”