'Our boy has a deadly brain tumour - every day we spend with him is special'

The family of a Midlothian schoolboy with a life-limiting double brain tumour say “every day is special” as they focus on making lasting memories together.

Lyle Cornet, ten, was diagnosed with an optic pathway glioma aged one in 2016. At the time, doctors told his parents that he would only survive another year.

A decade on, Lyle has undergone four rounds of chemotherapy and defied expectations. But an emergency MRI two weeks ago has revealed the tumour on his frontal lobe has gone from stable to active.

Mum-of-four Lyndsey, 33, says the family are once again facing an anxious wait.

“It has been devastating – a very difficult time,” she told STV News. “We’re just kind of waiting. There’s only so many options available.

“It’s a nightmare not knowing when our time is up with him.”

Lyle was diagnosed with optic glioma at a year old Lyndsey Cornet

Lyndsey first suspected something was wrong when she noticed three-month-old Lyle’s eyes began to shake involuntarily. She took him to the GP and was sent to the Royal Hospital for Children for full-body tests.

There, he was diagnosed with the double optic pathway glioma. Because of the tumour’s location along the optic nerve and frontal lobe, surgery is not possible.

“He was having seizures, losing control of his body. We were told he wouldn’t sit up, walk or talk. But with constant help from us and physio, he has come on leaps and bounds.”

Lyle was stable for five years following chemotherapy, but doctors are now monitoring him before deciding when further treatment will begin.

His condition has been deteriorating within recent months.

Lyle was given a year to live following his diagnosis - but he defied expectations — Lyle was given a year to live following his diagnosis – but he defied expectations Lyndsey Cornet

Lyndsey says her son keeps his spirits up by spending time with his brothers, Chris 12, Leo six and three-year-old Cole.

“He loves going out with his siblings – he just loves to socialise. It takes three hours to get out of Asda because he talks to absolutely everyone.”

The family has launched a fundraiser to help them make more memories together – whether it’s days at the park or a trip to the funfair.

“I hope we still have Lyle for a long time but you don’t know when your time is up. Every day is special,” Lyndsey said.

“Every photo, every memory is very important for the future. We want to make as many as we can before he loses his sight completely.”

Lyle with his brothers Chris, Cole and Leo Lyndsey Cornet

Lyle with his dad Tjay and baby brother Lyndsey Cornet

Lyndsey has been sharing Lyle’s journey on social media to raise awareness of childhood cancer and support other families facing similar diagnoses.

“When you go through something like this, your mental health is so important. You’ve got to be strong. If I can support people through this, I want to do that.”

Later this year, Lyle will mark ten years since his diagnosis by ringing the hospital bell at children’s cancer charity Jack’s Den in Livingston on Saturday, February 14.

Lyndsey says NHS staff have been “incredible” throughout Lyle’s health ordeal.

“The team that we’ve got – teamwork does make the dream work. They’ve just been like family,” she said.

“It’s been a long, hard journey, but having the right support around you makes it easier.

“For now, we want to make every moment with Lyle count.

“Remember to kiss your loved ones and tell them you love them.”