Mum of tuberous sclerosis sufferer Darcy Holt tells other parents ‘help is out there’

Jessica Holt with daughter Darcy.
Jessica Holt with daughter Darcy.

A mum whose daughter suffers from a rare genetic condition and almost lost access to a vital treatment has told other parents going through the same trauma that help is out there.

Darcy Holt, seven, suffers from tuberous sclerosis (TS) - a condition that means she develops tumours that lead to illnesses including epilepsy.

She was given a trial of the drug Everolimus, which her mother Jessica said reduced the number of seizures she has a day from around 80 to just two or three.

Last year it looked like the NHS would withdraw funding for the treatment in England, before parents and the Tuberous Sclerosis Association (TSA) charity fought for the drug to be paid for.

Darcy’s mum Jessica Holt, from Pontefract but now living in South Elmsall, said: “It was my worst nightmare when it looked like the treatment would taken away because it was working so well.

“Darcy still has the condition and will always have some issues but now she’s doing brilliantly.”

She said most people are still unfamiliar with the condition and she was unsure at first what do when Darcy was born before she was given the right advice.

And she said parents can receive a lot of help from the TSA. She said: “It’s a rare condition but don’t panic too much – everyone is affected differently.

“Help is out there for people you just have to look in the right places.”

Marking TS Awareness Day, Louise Fish, TSA chief executive, said: “We make a positive impact on the health and wellbeing of the TSC community by providing direct support to individuals and families living with TSC, funding internationally-recognised research into the condition and campa