I found out my 11-year-old son has terminal cancer during routine Specsavers eye test – I still can't believe it | The Sun

A MUM who horrifically found out her 11-year-old son had terminal cancer during a routine Specsavers eye test is still coming to terms with what's to come.

Clare Smith's son Robert had no symptoms, but was found to have an aggressive brain tumour.

The tumour will eventually start affecting the 11-year-old's ability to breath, as well as his blood pressure and heart rate.

The Derbyshire boy loves gaming and Lego, and dreams about going to Disneyland – and now his family is working to get him there and make lasting memories.

Clare struggles to hold back tears when she recalls the moment she was told the heartbreaking news no parent should have to hear.

The 34-year-old, who is now a full-time carer for her boy, told NottinghamshireLive: "We got the formal diagnosis on August 19.

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"This diagnosis has come as a complete shock for our family as it was picked up from a routine eye test at Specsavers, and currently, Robert does not have any of the symptoms, but this could change very quickly."

The mum and son then rushed to the eye clinic in Derby for further investigations.

Clare said: "There were no signs of a tumour at first.

"He had the pre-checks and the doctor looked at his eyes, and called me out.

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"She told me that there is pressure on the brain and that we need to go to the hospital."

The mum added: "Robert was transferred to the Children's A&E, and then to general at the Queen's Medical Centre in Nottingham."

He had a CT scan at the QMC on Friday, August 19.

That afternoon the family were told by doctors that they found a tumour in his brainstem.

Robert was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) which is a highly aggressive and difficult-to-treat brain tumour.


It occurs in an area of the brainstem – the lowest, stem-like, part of the brain – called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure and heart rate.

Clare said: "Only one per cent of children make it five years with this condition from diagnosis.

"And the average survival rate is nine months."

Reflecting on how their lives have changed since Robert's diagnosis, she added: "I do not think it has torn us apart – I think it brought us closer instead.

"We are trying to raise money to get him to Disneyland. We try to make Robert's dreams come true as much as we can.

"We are just trying to make memories as fast as we can before it is too late."


Clare took a deep breath and added: "Unfortunately, with this condition, they go paralysed. They struggle to swallow, they struggle to breathe."

Speaking of her son's terminal condition, she said: "It is not calm, nor peaceful.

"They start sleeping more and more until they just do not wake up anymore. It was a shock.

"I still do not want to believe it, if I am being honest. My boys have been through so much as it is."

She said she checks her son's breathing multiple times a night, and then gets up in the morning to observe the movement and noise.

Clare said: "I know it is happening.

"I go to bed every night wondering if my boy is going to be awake the next morning.

"He is aware that he has a brain tumour. But we do not want him to be scared when he goes to bed.

"We are trying to make him enjoy his childhood while he can. He can move, he can talk, he goes to school, he can eat McDonald's, enjoy his time with his brother."

One of Robert's wishes is to visit Disneyland, and the family had raised £3,200 so far.

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In a caption on their fundraising page describing their cause, the family said: "We are grateful for any donations you feel you can give to make Robert’s journey wonderful, and happy memories last forever.

"Any monies left after our journey will go to DIPG research to help other families not go through what we are currently going through"

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