The family of Ollie and Amelia Carroll have been dealt a devastating blow after hearing the NHS will not fund specialist treatment for the pair.

The Carroll family, of Varden Road in Poynton, rallied when Ollie, seven, was diagnosed with Late Infantile Batten Disease, and were devastated when it was confirmed that their youngest daughter Amelia, four, was also diagnosed.

But after successfully campaigning to take part in a clinical trial, which has slowed down the effects of the disease, they have been told ongoing treatment will not be funded by the NHS.

Mum Lucy, 32, said: “It’s devastating.

“We know [the treatment] works. We are in the unusual position of having two children with Battens Disease so we can compare. Amelia is now at the age where Ollie couldn’t walk two steps and was losing his words.

“Amelia hasn’t had a seizure in for a whole year, she’s going to school and she’s learning new things.

“She goes dancing and swimming, she’s just amazing.

“To be told that we can’t have this drug is just heartbreaking.”

Ollie and Amelia, who are both pupils at Vernon Primary School, were receiving treatment as part of an extended clinical trial. It had been hoped that the National Institute for Health and Care Excellence (NICE), which recommends which treatments should be funded by the NHS, would approve funding for all children with Battens Disease.

But despite acknowledging that the treatment slows the deterioration of the condition, NICE questioned its long term effectiveness.

Dr Peter Jackson, from NICE, said: “In the absence of long-term evidence about its effectiveness in stabilising the disease and preventing death, and having taken all the health and non-health- related benefits of cerliponase alfa into account, the committee considered that the drug was not a good use of NHS resources.”

The Battens Disease Families Association has now launched a petition to get the decision overturned, and the family are due to appeal the decision with NICE at the end of the month.

Lucy, who is also mum to Danny, 10, and Mickey, nine, and has raised £10,000s through their dedicated charity ‘Ollie’s Army’, is appealing for people to sign the online petition.

She said: “If we can get 100,000 signatures we can get the decision discussed in Parliament. This isn’t just about our children, it’s about all children who are affected by this. Our children’s lives are hanging in the balance.”

To sign the petition go to www.change.org .