I thought the faint white glow was just the light reflecting in my baby boy’s eye – don’t make my mistake

A MUM is warning others not to make her mistake, after mistaking a white glow in her boy’s eye as a light reflection.

Leonnie Ord, 33, started noticing a glow over her one-year-old son Cillian Coyles' left pupil in August.


But, as it would come and go, she just thought it was the light's reflection and was harmless, like many parents would.

It can only slightly be seen in footage of “cheeky chap” Cillian in September, but looks similar to a red-eye reflection with flash photography.

In October, the glow started to become more prominent and like he had a “cat's eye”, so Leonnie and 36-year-old fiancé Gary Coyles sought medical advice.

After undergoing several tests, Cillian's parents were stunned when he was diagnosed with retinoblastoma.

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The rare type of eye cancer commonly affects young children.

Cillian has lost vision in his left eye as a result of the tumour growing on his optic nerve and is now having targeted chemotherapy in order to shrink it.

Leonnie said his eyesight may have been saved had she and Gary thought to get their son checked out sooner – and is now warning other parents to “know the glow”.

The mum-of-two, from Hebburn, Tyne and Wear, said: "If you see anything different with your child's eye, you need to get it checked out.

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"If you notice something with your friend's child's eye or if you see a photo on Facebook, don't be frightened to alert that parent.”

"Every change in the eye doesn't mean that it could be cancer.

“But if we'd spotted and got Cillian checked sooner he could have potentially still had his sight in his left eye, we just don't know.

"Essentially that happy, smiling picture of him hides a secret that can be deadly if it's not caught in time.”

Leonnie said: "Last summer I started noticing a glow to his eye but it wasn't very often at all and I kind of put it down to a light reflection.

"Then I started to notice it a little bit more and we moved to a house, which had a lot more light and then I started noticing it more.”

It was in the weeks leading up to Cillian’s diagnosis the white glow became more apparent.

"When it started becoming more prominent and I was looking down at him I could see this white looking back at me, which now I know is the tumour in his eye.

"I'd mentioned it to my partner Gary who hadn't seen it and we went a week and I was asking 'can you see that? Come and have a look at that' and then he started noticing.

"So we knew there was something there that needed to be checked."

Signs of retinoblastoma

  • An unusual white reflection in the pupil
  • A squint
  • A change in the colour of the iris
  • A red or inflamed eye 
  • Poor vision

Social worker Leonnie contacted her GP and an optician before she rang A&E in October and spoke to a consultant who advised her to bring Cillian in to be seen.

He was then referred to a paediatrician eye doctor who revealed that the one-year-old had lost his vision in his left eye, and that he was almost certain he had retinoblastoma.

Two days later they travelled to Birmingham Children's Hospital where he was officially diagnosed with retinoblastoma.

Leonnie, who is also mum to five-year-old Aoife Coyles, said: "When I was starting to Google it, I went from cataracts to cancer.

"I'd gone from one end of the scale to the other.

"I knew that it was something, but I would never have guessed that it would have been cancer.

"So that obviously frightened the life out of me and I couldn't sleep that night.

"Before we got down to Birmingham, we kind of accepted that we thought he was going to be diagnosed with cancer.

"My main worries were that he was going to lose his little personality, hair and he was going to be really poorly. They were three things that I just couldn't get out of my head."

Cillian is now having targeted chemotherapy, with one of the treatments being intravitreal chemotherapy eye injections.

Leonnie said: "The treatment shrinks and also calcifies the tumour. 

“It's more than likely always going to be in his eye but it will be calcified and it kind of kills the tumour.

"The way that they described it is that the research had come along massively, but if Cillian had presented five years ago his eye would have been removed straight away.

"We were told that his chemo was going to stop and that they were really happy with it and at the next check, his chemo needed to restart again.

"The chemo has started to toxify the healthy part of his eye, so they're going to have to treat that now as well.

"When he was first diagnosed they talked about it being a rollercoaster and we didn't quite understand what that meant until these past few months because it's very much ups and downs.”

Despite undergoing gruelling treatment, Leonnie says her boy has a constant smile on his face.

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After a “rollercoaster” couple of months, she is raising awareness of the “white glow” in order to save a life.

The family set up a JustGiving page to raise funds for the Childhood Eye Cancer Trust and Leonnie will be completing the Great North Run this September.

You can donate here.



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