‘Superstar’ Nottingham mum celebrates as sons turn 20

A mother who gave up her nursing job to care for her sons has said she is looking to the future as they thrive in the face of a rare hereditary illness.

Identical twins Freddie and Louie Dawkins, who turned 20 in September, both lost their sight aged three and were diagnosed with the CLN5 variant of Batten disease, which affects their nervous system.

Their mother, Sarah Finney, from Nottingham, said her boys had been “so amazing and brave and resilient” in coping with the condition.

After being nominated for family carer of the year in awards run by the charity Sense, she said she hopes to highlight the strength and determination family carers display every day.

“The thing about being a family carer [is] you find strength you never knew you had,” she said.

“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.”

Ms Finney, 52, said her sons had a “horrendous” experience when they lost their sight at the same time as each other, but a love of music and taking part in online classes and drumming lessons with Sense had helped them to recover their happiness.

She added although Louie and Freddie have both had “close shaves” with their health problems, she is looking positively to the future.

“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,” she said.

“Now I’ve even started to think about their 21st.”

Pamela Fitton, a consultant from Sense who works 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.”