THE mother of a six-year-old with a life-limiting illness who defied doctors has called her son a “superstar”.

Freddie Ormrod was considered a normal, healthy baby from birth as his parents, Louise and James, from Colne Engaine, looked forward to his life ahead.

However, it all changed when he was rushed to hospital aged eight months following a seizure.

After a series of blood tests, the doctors found white matter on his brain and revealed he had Leigh Syndrome, a rare neurological disorder which impacts one in 40,000 children.

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The heartbreaking news meant Freddie wasn’t expected to live much longer than his second birthday, as the degenerative disease would devastate his tiny body.

He struggles with muscle weakness, can’t sit or walk unaided and is completely non-verbal, communicating through signs and pictures, while also being fed through a tube in his stomach.

Yet, despite the bleak diagnosis, little Freddie is now six-years-old and lives for cake - as well as spotting his mum tripping over.

Louise, 38, had to give up her job at a mortgage brokers in London to become her son’s full-time carer following the diagnosis but says she loves every second she gets with him.

“I had a few concerns initially after Freddie missed a couple of milestones; he wasn’t rolling and he wasn’t laughing much,” she said.

“It’s not a very nice condition but we get a lot of support from East Anglia’s Children’s Hospices who make life easier for us.

“When he was given a life-limiting illness, the last thing I wanted was someone else to spend all that time with him, especially as I didn’t know how much time he had.

“I was having a year of maternity leave but, at the time I was due to go back into work, we were calling ambulances one or two times a week because of the seizures Freddie was having.

“I didn’t want to be that far away from him.

“Covid hasn’t been an ideal time for a child like him as the most likely thing to end his life is respiratory illness.

“We do a lot to try and protect him and have shielded for so long that he hasn’t actually been ill during the pandemic.

“We cross our fingers he can live his life as long and as happily as he can. He has a life that when we got his diagnosis we never thought he would have.”

Despite all predicted for brave Freddie, he started at Colne Engaine Primary School last year and is loving life making friends his age.

“Him starting school last year was huge,” Louise added. “We never even dared to think about school because all the statistics said he would never live that long.

“When we dropped him off at the gates for his first day all the other parents were crying. My husband, James, and I had massive smiles on our faces - we never thought that day would come.”

To help accommodate for his needs, James and Louise, who have recently announced the arrival of a daughter, adapted their house to have a downstairs bedroom and bathroom.

It means Freddie can play with his toy trains and watch Disney and Mr Tumble whenever he likes.

“The care is full-on and it takes a long time to get ready in the morning but he is very happy,” added Louise.

“We can’t leave him unattended as he has 11 medications to take four times a day and needs his hydration eight times a day.

“He’s a real superstar though. He is cheeky, strong and determined.

“Believe me, he can spot a cake from a mile off and will sign that you need to share it with him.

“He has a slapstick sense of humour too, if you were to trip over something he would find it hilarious.

“It may not be communicated like a child his age typically would, but he doesn’t know any different.

“He doesn’t understand his condition or know he’ll have a short life, he just has a lovely time moving around in his walker and making people laugh."