A family are campaigning for NHS bosses to fund a wonder drug which can save the lives of people with are rare genetic condition.
Darcy Holt and dad Simon both have Tuberous Sclerosis Complex (TSC), which causes mainly benign tumours to form around the body, affecting the brain, skin, kidneys, heart, eyes and lungs.
As a result of the condition, around 20 youngsters a year develop inoperable brain tumours.
The drug Everolimus can shrink the tumours and stop them growing - but is not routinely available on the NHS for the tumours, known as SEGAs.
Darcy, 4, is on a clinical trial for Everolimus because she has epilepsy caused by the condition.
The Pontefract family fear that Darcy and dad Simon, 29, could potentially develop SEGAs and be left to make a funding request to the NHS for a drug which could be refused.
Mum Jess Holt, 30, said: “We know that Darcy is going to have to come off it when the trial ends.
“I know after that if she needs it we’ll have to fight for it. It’s a ticking time bomb.”
Mrs Holt said Darcy no longer needed frequent hospital visits after starting on Everolimus.
She said: “Darcy has gone from having up to 90 seizures a day to one or two a week. She hasn’t been to hospital as much and we haven’t had to call ambulances.”
On October 26 the family took part in a protest outside Parliament in London calling for Everolimus to be funded.
They were joined by the actor David Suchet, whose grandson has TSC, and Greg Mulholland, the MP for Leeds North East.
The NHS Clinical Priorities Advisory Panel was due to meet to decide whether to approve Everolimus.
The Tuberous Sclerosis Association has been urging the NHS to approve the drug.
Chief executive Jayne Spink said: “The medicine these young people need in order to continue living is sitting on NHS pharmacy shelves.
“It is totally abhorrent that their families and their doctors should be forced into planning for the end of life for these patients and unthinkable that a young person be allowed to die when the treatment that could save them costs less than kidney dialysis.
“I can see no justification for allowing this to happen.”