Newcastle family hope research will help boy with rare epilepsy who has up to 50 seizures a day

The family of a little boy from Newcastle say they hope and pray that new research will help their son, who has a rare life-limiting condition.

Paddy Holliday has KCNT1-related epilepsy, a severe neurological condition that around only 12 children in the UK are known to have.

Symptoms can differ from patient to patient, but most children experience:

  • Frequent seizures

  • Poor mobility

  • Sight loss

  • Feeding and breathing complications

  • Speech issues

At its worst, three-year-old Paddy was having up to 50 seizures a day.

His mum Catherine Holliday said: "He has several seizures every day. He has had thousands so far in his life.

"There is nothing that trigger them and nothing we can do to stop them, we just have to be here for him and comfort him, but it is really difficult because he can't tell us how he is feeling."

There is no known effective treatment or cure for the condition as very little research has been done about it.

The charity Action Medical Research is now funding a study at the University of Leeds to try and find medication that could control seizures and limit the damage they cause to the brain.

Ms Holliday said: "We know Paddy is not going to be able to run and talk, but even a little bit more interaction would be brilliant.

"We hope they find something that will help Paddy and children like him, whether that is in a year, or in five years, we just hope he is still here to benefit from it."

Dr Emily Caseley, a Postdoctoral Research Fellow at the University of Leeds taking part in the study, said: "The current treatments for KCNT1 are really lacking. We have about 15 compounds now, 15 chemicals that we know block this channel.

"It's incredibly motivating to be able to see that tangible effect, which feels within reach now."

For more information about KCNT1-related epilepsy, visit the Action Medical Research website.

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