THE mum of an 11-year-old girl with a rare terminal condition has shared the harrowing story of when she defied the odds after doctors told her family to say goodbye.

Kaycee Bradshaw, who is the youngest of six siblings from Sutton, was diagnosed with Batten disease in 2016.

Children with the condition rarely survive past the age of 12. The disease causes patients to have seizures, muscle spasms, progressive dementia, visual impairment leading to blindness.

It also results in the loss of speech and mobility.

Kaycee is currently one of a few children receiving an enzyme replacement treatment called cerliponase alfa, also known as Brineura, which slows the effects of the incurable condition.

Hospital admission

However, she is still more susceptible to illnesses making her more vulnerable, and on December 27 2023 was rushed into hospital struggling to breathe and having turned "grey" due to a chest infection.

Her mum Claire Bradshaw, said: “She looked a bit poorly over Christmas, we kept an eye on her but when her carers came back to work on December 27, they shared my concern, and I rushed her into hospital in a black cab as there were strikes on that day.

“Whiston were fantastic, but a doctor came to me on December 29 and said that they didn’t have enough oxygen for her. With her having Battens, they told me she probably wouldn’t make it, [and told me] to say goodbye and should they ‘let her go’ and make her comfortable or ventilate her.

'I just went into a blur'

“I just went into a blur, I know the timings with Battens and Kaycee is blind now, but she’s never been ventilated before, she is still laughing and joking and I felt we absolutely were not at that point yet.

“I told them to ventilate her, I screamed at them too and they said she could still die, even with ventilation, but I thought she deserved a chance.

“Within a few hours our Kaycee was OK. She has been recovering and we’ve been in and out of hospital since but yesterday [Monday, April 22] she was finally back at school.”

Claire added that she wants more to be known about raising children with life-limiting conditions, such as Battens Disease, and hopes by sharing her story she can help others.

Fighting for her

She added: “My Kaycee can’t see now, she’s in a wheelchair and has a 65-degree spinal turn due to her scoliosis. But she loves to laugh, loves her friends and as long as that’s the case I’m going to fight for her.

“Life is not easy for her, but she is strong and keeps fighting herself, shocking all the doctors, she’s a warrior.

“She makes me brave, before Kaycee I wouldn’t push for anything. Now I am her voice, I fight because she needs me.”

Despite the odds, Kaycee will be celebrating her 12th birthday this Saturday with family and friends and her carers, who Claire said bring her so much joy.