PARENTS of an Abingdon woman with life-threatening epilepsy have pleaded with NHS bosses to fund a drug which could save her life.

Bobbie and Steve Tyler say the drug everolimus, already available on the NHS in Scotland, could drastically improve the debilitating effects of Tuberous Sclerosis Complex (TSC) which their daughter Jennifer has lived with her whole life.

The 24-year-old, who has severe learning difficulties, is currently in the John Radcliffe Hospital in Oxford as medics make a final bid to try to find a way to control her seizures.

However, her parents are calling on NHS England to change its prescribing policy and fund the drug which is a new treatment specifically for patients with treatment-resistant TSC-related epilepsy.

Mrs Tyler, a librarian of Ballard Chase, Abingdon, said: “With everolimus, not only will we no longer be continually terrified that every seizure Jennifer has will be her last one, but there is a good chance that her overall health and quality of life will significantly improve.

“We know from the medical evidence available that everolimus could reduce the number of seizures Jennifer suffers every day.

“It could also shrink the TSC-related tumours that she has on her kidneys and lungs.

TSC is a rare genetic condition that can lead to benign tumours in various organs of the body including the brain, eyes, heart, kidney, skin and lungs.

NHS England refused to fund everolimus for TSC-related epilepsy earlier this year.

It is now preparing to reconsider its position during its 2019 commissioning round, with a decision expected to be announced in early December.

In July NHS bosses said there was ‘sufficient evidence’ to commission the treatment, but said it would not prioritise funding the drug at that time.

Mrs Tyler said that if the drug was not made available soon, the family would be forced into a ‘heart-breaking’ decision about their future.

She said: “We will have no choice but to split our family up.

"Jennifer and myself will move to Scotland where the NHS already funds everolimus for TSC-related epilepsy, leaving my husband Steve behind to run his business which is based in Oxford. It is heart-breaking, but what else can we do?”

The family’s calls have been backed by the Tuberous Sclerosis Association (TSA) – the only UK charity which supports people affected by TSC.

Chief executive of the TSA, Louise Fish, said: “It is vital that NHS England listens to all the evidence available about the efficacy of everolimus for treatment-resistant TSC-related epilepsy, including evidence from patients and their families.

“We are campaigning hard for this to change so that all the available evidence is taken into account.”