Mum supported by Demelza welcomes new drug trial which could change lives

Hayley Borowiec’s eight-year-old son Ralph has Dravet syndrome - a rare and complex condition which causes prolonged, frequent and difficult to control seizures, alongside a spectrum of associated health challenges.

Last week it was announced the new drug being trialled, zorevunersen, has seen seizures fall by up to 90% for young people taking part in the trials.

Hayley, who lives with her family in Ramsgate, said it’s exciting trials are taking place.

She said: “The future is moving in the right direction for Dravet families.

“I always try and be a bit realistic as these things are years away, but there do seem to be a lot of exciting things happening.”

Ralph was diagnosed when he was 18-months-old, after having his first seizure at seven months.

While he is currently experiencing a serious seizure roughly every three months, Hayley said this is changing all the time – she said the pattern of seizures and the triggers can constantly change, so you don’t ever really know how it’s going to be.

Ralph’s seizures can be triggered by different things, but excitement is a big trigger so Hayley said it’s difficult to take him to places like soft play as he will almost certainly have one.

She said: “When Ralph has a serious seizure he will drop to the floor and fall unconscious.

“He can only manage a few minutes at somewhere like soft play and then he’s unconscious and it’s just dangerous.

“It would be so nice if something did exist that meant he would be able to do things. To be able to take him to a play area and him not have a seizure would be life-changing – something that would give a bit of a buffer would be amazing.”

Demelza supports Hayley and her family mostly with care at home and she said to have someone she can trust to look after him at home or take him out is a massive help.

The family is also helped by Demelza’s practical support volunteers, who drive them up to London for Ralph’s medical appointments.

“Ralph is always fine at Demelza – it’s another safe place as well as home which is very nice to have,” Hayley added.

“It’s not often people know what they are doing with someone like Ralph but with Demelza staff, they do.”

Dravet is a rare, life-long condition - around one in every 15,000 babies in the UK are born with it - and without effective treatment, uncontrolled seizures can be incredibly dangerous for children.

Trial drug zorevunersen is given as an injection in the spine which travels through spinal fluid to manage the faulty gene affecting the brain, the underlying cause in most cases of Dravet. 

Demelza’s Lead Nurse, Helen Rolls, said: “For those living with daily seizures, any improvement would be truly life-changing, not only for the children themselves, but also for their families.

“The impact goes far beyond health. It would be socially transformational. Many children feel extremely tired after a seizure, which means they often miss out on activities and interactions with others.

“As children with Dravet grow older, the unpredictability of when and where a seizure might occur can also affect their confidence and self-esteem, so improved control could make a profound difference to their wellbeing.”