Scarborough mum's appeal for life-saving drug

Rhys Mallinson and Mum Jo Parrott relaxing at home in Scarborough. 1837112a

A Scarborough boy whoÂ suffers from a rare genetic disorder will have his life-changing medication taken away as a result of NHS England's decision not to fund it.

Rhys Mallinson, of Newby, was born with Tuberous Sclerosis Complex (TSC), a condition that leads to growths, which are benign tumours, in various organs.

As a consequence of the condition, the 11-year-old suffers from severe epilepsy, autism and ADHD and he has the mental development of a 12- to 18-month-old.

Four years ago, he started taking Everolimus, a drug used to control refractory epilepsy, on a trial basis and since then his quality of life has drastically improved.

Rhys’s mum, Jo Parrott, said: “Over the years Rhys has tried more than 10 epilepsy medications but none have really helped.

“We were out of options and didn’t know what else to do so we were referred to the TS clinic at Alder Hey Children’s Hospital in Liverpool and that’s when he was given Everolimus.

Before he was on the drug he would go to hospital two or three times a week with prolonged seizures. Now, I can’t even remember the last time he was in hospital. He still has seizures every day but they’re not as bad as they used to be.

“This drug has given him the quality of life he never had.”

In March 2018, NHS England consulted on draft guidance which stated that there was “enough evidence” to consider making Everolimus available as an add-on treatment for TSC-related seizures.