Family's plea to NHS bosses to fund wonder drug that could save lives

A family are campaigning for NHS bosses to fund a wonder drug which can save the lives of people with a rare genetic condition.

Thursday, 24th November 2016, 12:48 pm
Updated Tuesday, 29th November 2016, 9:26 am
FIGHT: Darcy Holt with her mum, Jess.

Four-year-old Darcy Holt and dad Simon both have Tuberous Sclerosis Complex (TSC), which causes mainly benign tumours to form around the body.

As a result of the condition, around 20 youngsters a year develop inoperable brain tumours.

The drug Everolimus can shrink the tumours, known as SEGAS, and stop them growing - but is not routinely available on the NHS. Darcy is on a clinical trial for Everolimus because she has epilepsy caused by the condition. Mum Jess Holt, 30, 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.

Sign up to our daily newsletter

The i newsletter cut through the noise

“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.”

The Tuberous Sclerosis Association has also been urging the NHS to approve the drug.