THE parents of an Abingdon woman with life-threatening epilepsy have said their daughter's future will be radically changed for the better after a decision to deny treatment on the NHS was reversed.

Bobbie and Steve Tyler have been campaigning for the drug everolimus to be made available on the NHS.

The drug they say would drastically improve the debilitating effects of Tuberous Sclerosis Complex (TSC) – a condition their daughter Jennifer has lived with her whole life.

And despite the drug already being available in many other European countries including Scotland, bosses at NHS England had until now deemed the treatment too expensive.

Twenty-five-year-old Jennifer, who has severe learning difficulties, had spent much of last year in the John Radcliffe Hospital in Oxford as medics made a final bid to try to control her seizures without the drug.

However, following the NHS England decision, Mrs Tyler, who lives in Abingdon with her daughter and husband, said: “We are delighted and relieved that the earlier decision to not fund everolimus for TSC-related epilepsy has been reversed by NHS England.

“Our daughter Jennifer, who has just celebrated her 25th birthday, can now look forward to embarking on the treatment which will radically change her life.”

TSC is a rare genetic condition affecting one in 6,000 people that can lead to growths in various organs of the body.

These growths may be referred to as benign and non-cancerous tumours, with problems from the growths being caused mainly because of their size and where they are in the body.

The organs most commonly affected by the growths are the brain, eyes, heart, kidney, skin and lungs.

Had NHS England not decided to fund everolimus, Mrs Tyler revealed she would have had no option but to split her family up and move to Scotland with Jennifer to access the drug while her husband stayed in Oxfordshire.

Mrs Tyler said: “We can now look forward to the new year with the knowledge that our daughter has a future in England after all and that she doesn’t have to face leaving her dad as well as her family and friends to start again in Scotland.

“People living in England with this devastating disease can now have hope.”

The family had been supported in their campaign by the Tuberous Sclerosis Association (TSA) – the only UK charity which supports people affected by TSC.

TSA chief executive Louise Fish says: “Around 70 people in England are currently prescribed everolimus for TSC-related kidney and brain tumours.

“NHS England estimates that a further 300 people in England will benefit from treatment with everolimus for TSC-related refractory epilepsy.

“We’re delighted that NHS England has decided to fund this life-changing and potentially life-saving treatment from April 2019 onwards.

“We’ll be working with TSC clinics across England to help them get ready to prescribe this drug to more people who can benefit from it.”