Family raise awareness of rare eye cancer after spotting it in photo of son

Brody Barnes has Retinoblastoma.
His aunt and uncle are running the London marathon to raise money a

Brody Barnes has Retinoblastoma. His aunt and uncle are running the London marathon to raise money and awareness about he cancer. Brody is pictured with his mum Stacey Declerk and dad Rich Barnes. - Credit: Sonya Duncan

A mum who first noticed something was not quite right with her son's eye in a picture is now hoping to help save another child's life by raising awareness about the condition he has.

Stacey Declerk, from Watton, was none the wiser about the cancer in her son's eye when she was testing out her new camera gifted to her by her fiance Richard Barnes.

Brody Barnes has Retinoblastoma.
His aunt and uncle are running the London marathon to raise money a

Brody Barnes has Retinoblastoma. His aunt and uncle are running the London marathon to raise money and awareness about he cancer. Brody is pictured with his mum Stacey Declerk and dad Rich Barnes. Byline: Sonya Duncan - Credit: Sonya Duncan

The mum-of-two was using the Canon's sports mode function, which took hundreds of pictures of her Brody in seconds.

But as she was looking through and deleting the pictures, she spotted one that looked 'funny', showing Brody with a white mark in one of his eyes.

The 36-year-old said: "I didn't go to the doctor, I didn't think nothing of it to start with. 


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"I was showing my mum the pictures, and she then kept pestering me to go to the doctors and kept ringing me everyday asking if I had seen anyone."

A picture taken by Stacey Declerk which later revealed her son had cancer in his eye.

A picture taken by Stacey Declerk which later revealed her son had cancer in his eye. - Credit: Stacey Declerk

After searching the symptoms online and listening to her mum's concern, Ms Declerk took Brody to see their GP, who referred them for an eye test.

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The tests revealed Brody could have a tumour in his eye. He was later diagnosed at six months old in March 2019 with Retinoblastoma, a rare type of eye cancer usually affecting young children.

Ms Declerk said: "You can't put it into words how destroying it is, it's a feeling I don't think anyone can understand until you're in that situation.

Brody Barnes has Retinoblastoma.
His aunt and uncle are running the London marathon to raise money a

Brody Barnes has Retinoblastoma. His aunt and uncle are running the London marathon to raise money and awareness about he cancer. Pictured is the tumour before and after chemotherapy. Byline: Sonya Duncan - Credit: Sonya Duncan

Brody was diagnosed in March 2019 with Retinoblastoma, a rare type of eye cancer.

Brody was diagnosed in March 2019 with Retinoblastoma, a rare type of eye cancer. - Credit: Stacey Declerk

"It's just like your heart is literally broken when they say 'your child's got a tumour, it's cancer', it's just an unbelievable world destroying feeling.

"You get this inner strength, you don't have a choice, you have to cope. 

"I find it difficult to think for the rest of his life he's going to have this tumour in his eye.

"Everyone always says he has the most beautiful blue eyes, and your heart breaks every single time you hear it."

Brody has been receiving treatment for cancer in his eye.

Brody has been receiving treatment for cancer in his eye. - Credit: Stacey Declerk

Ms Declerk and her fiance were told the options for Brody, now three, included either having his eye removed or receiving a specialist form of chemotherapy in the hopes of saving it.

The 36-year-old said: "The chemicals that feed the tumour stops when the eye fully develops at the age of five or six.

"So we're trying to get to that stage without having to remove the eye and keeping that tumour contained until he's reached that age.

Brody was diagnosed in March 2019 with Retinoblastoma, a rare type of eye cancer.

Brody was diagnosed in March 2019 with Retinoblastoma, a rare type of eye cancer. - Credit: Stacey Declerk

"We don't know how much of his vision is lost at the moment, because he can't tell us. He can point to pictures and things, he can see out of that eye but it's hard to tell.

"What we did pick up on was when we were waving stuff in front of his face he wouldn't sort of notice it to start with, and if he tried to grab something he'd be completely off like a normal child, he wasn't catching the toys."

Brody receives treatment at the Royal London Hospital every three months and will continue with regular check-ups until the age of five or six, his mum said.

Brody Barnes has Retinoblastoma.
His aunt and uncle are running the London marathon to raise money a

Brody Barnes has Retinoblastoma. His aunt and uncle are running the London marathon to raise money and awareness about he cancer. Brody is pictured with his mum Stacey Declerk and dad Rich Barnes. Byline: Sonya Duncan - Credit: Sonya Duncan

"It's going to be in the background for the rest of his life", she added.

"When he comes around after treatment, he's very distraught for at least an hour. It's not very nice.

"Then the days after he's had that, he's sort of got a red eye and is a bit uncomfortable, but he's just a soldier."

Brody Barnes has Retinoblastoma.
His aunt and uncle are running the London marathon to raise money a

Brody Barnes has Retinoblastoma. His aunt and uncle are running the London marathon to raise money and awareness about he cancer. Brody is pictured with his mum Stacey Declerk and dad Rich Barnes. - Credit: Sonya Duncan

The family have been fundraising for The Childhood Eye Cancer Trust (CHECT) to raise awareness about the condition, and Lisa and Jamie Tubby, Ms Declerk's sister and brother-in-law, will be running the London Marathon in October for the cause.

Ms Declerk hopes their efforts will make people aware of Retinoblastoma and help "save someone else's child."

She added: "I hope when people look at pictures or if someone has a squint or a white glow it will jog their memory and they will think it might be something."

Lisa and Jamie Tubby, Ms Declerk's sister and brother-in-law, will be running the London Marathon in October for the cause.

Lisa and Jamie Tubby, Ms Declerk's sister and brother-in-law, will be running the London Marathon in October for the cause. - Credit: Stacey Declerk

To donate to the family's fundraiser visit here.

What is Retinoblastoma?

Retinoblastoma is a rare type of eye cancer that can affect young children, usually under the age of five. Around 45 children are diagnosed with the condition every year in the UK.

The NHS says the condition can either affect one or both eyes, and if picked up early can often be successfully treated.

The signs and symptoms include an unusual white reflection in the pupil, a squint, a change in the colour of the iris, a red or inflames eye or poor vision.

In around 40pc of cases, retinoblastoma is caused by a faulty gene, which may be inherited from a parent or a change to the gene may occur at an early stage of the child's development in the womb.

It is not known what causes 60pc of cases.

For more information visit www.nhs.uk/conditions/retinoblastoma



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