Belfast Telegraph

Ellis Mcgaffin's mum wants to educate public on brain illness encephalitis that almost killed son

By Jill Goligher

The parents of a 10-year-old boy want to raise awareness of a devastating brain condition that nearly claimed their son's life.

Ellis Mcgaffin from Portadown is one of 500,000 people who are affected each year by encephalitis - an inflammation or swelling of the brain. He was just two when he was diagnosed.

His parents Leanne and Kyle Mcgaffin said nothing could have prepared them for issues caused by their son's diagnosis.

"We had been out on a Saturday and Ellis was in brilliant form, but that night he said he wasn't feeling well. He had a high temperature when we put him to bed but we passed it off as a cold," Leanne told the Belfast Telegraph.

"On Sunday morning we couldn't wake him up. He had been sick in his sleep and, being a nurse, I knew we had to get him to A&E.

"When we got him to the hospital he was taken into resuscitation straight away with what was believed to be meningitis and he was still unconscious.

"I felt like a zombie, it was just horrendous to see five doctors around Ellis, he was so tiny.

"Thankfully, the quick-thinking of a junior doctor saved Ellis's life as he suspected encephalitis and treated him for it."

Following the treatment Leanne and her husband were told by doctors that Ellis only had a 50/50 chance of surviving.

"He didn't regain consciousness until two weeks later and we had been told there might be a chance that he wouldn't walk or talk again because of the damage to his brain. Amazingly, on the third week he jumped out of his bed, with wires and everything attached to him, and met me at the door. I couldn't believe it," she explained.

Ellis has been left with an acquired brain injury, and although he survived, he has struggles with muscle awareness, tiredness, headaches, heightened hearing, lack of concentration and safety awareness.

"He didn't speak until he was four and his little muscles were weakened from the disease so he would walk with a limp," added Leanne.

"The damage will always be there but he is finding his own way to deal with things.

"He really is a credit to us. He's a wee fighter."

Leanne admitted it was a lonely road as the illness and its causes are not fully understood.

She now wants to educate others about the condition ahead of World Encephalitis Day next Thursday, February 22.

"It was hard as we didn't know anything about the condition, it took us a long time to get support," Leanne said.

"There is still a lack of awareness out there and education is definitely needed in how to cope with the lifelong implications associated with this disease, which is why we are supporting World Encephalitis Day."

Dr Ava Easton, chief executive of the Encephalitis Society, said: "This devastating condition has a high death rate, while those who survive can be left with an acquired brain injury resulting in epilepsy, fatigue, cognitive difficulties and memory problems.

"Statistics reveal eight out of 10 people do not know what encephalitis is.

"That is a truly startling figure, which we are striving to improve."

Belfast Telegraph

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