Mum looks to raise funds to find a cure

Georgina Coulson with her son John Joseph.'Picture Jane Coltman
Georgina Coulson with her son John Joseph.'Picture Jane Coltman

The mother of a boy who suffers from a rare form of epilepsy is looking to raise awareness of the condition.

Georgina Coulson’s eight-month-old son John Joseph was diagnosed with dravet syndrome, and now she is looking to raise funds to help find a cure.

Georgina, from Newbiggin, said: “Our beautiful boy was born on August 16 and was a picture of health. He was absolutely perfect and he completed my life.”

But on January 23, John Joseph suffered a seizure, and was rushed to hospital.

Weeks of tests and observations passed before he was finally diagnosed with dravet syndrome.

Georgina said: “Our lives changed forever when he tested positive for the scna1 genetic mutation that causes dravet syndrome.

“Development slows down in the second year of life. The mortality rate is alarmingly high. There is no cure.

“Children never outgrow it and each seizure they have can kill them. We have to sit and watch our son deteriorate and watch seizures come more frequent with children suffering hundreds of seizures a week, medication fails to work.

“This is what we are faced with. Dravet syndrome is so rare not even all the professionals have heard of it.”

Georgina is now hoping to raise money to fund research into finding a cure, and is hoping a fundraising day at Newbiggin promenade and the Coble pub on June 27, from 11am.

“We are desperate to see our son have a good quality of life,” she added.

“My son is eight-months-old and suffered so much already. We have already had so much help from lots of people and we couldn’t be more grateful.”

To help Georgina raise funds, you can donate at