Derbyshire boy, 11, given terminal brain tumour diagnosis after routine Specsavers eye test

Robert Smith (bottom left) and his family are hoping to go to Disneyland Credit: BPM Media

An 11-year-old boy has been diagnosed with a terminal brain tumour following a routine eye test at Specsavers.

Robert Smith, from Long Eaton, Derbyshire, loves gaming, Lego and dreams about going to Disneyland - but his life is far from normal for a boy of his age. 

He has been diagnosed with a diffuse intrinsic pontine glioma (DIPG), 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.

His mum, Clare Smith, could barely hold back her tears as she recalled the moment she received the news.

Mrs Smith, 34, said: "We got the formal diagnosis on August 19. 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.

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

Robert, as well as his brother Oliver, were diagnosed with autism when they were four and two years old respectively. 

After being rushed to the eye clinic in Derby, the youngster had a CT scan at Queen's Medical Centre in Nottingham on August 19. 

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

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

"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, Mrs Smith 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.

"Unfortunately, with this condition, they go paralysed. They struggle to swallow, they struggle to breathe. 

"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."

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

Mrs Smith added: "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 Roberts's wishes is to visit Disneyland, and the family have currently raised £3,450 to help "make Robert's journey wonderful". 

Writing on GoFundMe, 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."

A 'Family Fundraising Day' will be held at The Corner Room, in Long Eaton, from 11am until 4pm on October 8.

Demi Brown, one of the organisers, said: "I heard about Robert from a friend. We came together to help three children in Long Eaton who all have cancer. 

"We are trying to do a bit of fun raising money to help these families make more memories. Robert is very generous and said that his only wish is that his sibling gets a computer.

"But we know that his family always wanted to get him to Disneyland, but they have not reached the target.

"So obviously, we have got until October 8 to raise money for Robert and the other children to make their dreams come true."