A 'routine eye test at Specsavers' led to the family of an 11-year-old boy being told has a terminal brain tumour. Robert Smith, from Long Eaton, loves gaming, Lego and he dreams about going to Disneyland.
But his life is far from normal for a boy of his age. His mum Clare Smith can barely hold back her tears when remembering being delivered the heartbreaking news no parent should ever have to hear.
The 34-year-old, who is now a full-time carer for her boy, added: "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."
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The mum and son rushed to the eye clinic in Derby for further investigations. "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," Mrs Smith added. "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, have both been diagnosed with autism when they were four and two years old respectively. "Robert was transferred to the Children's A&E, and then to general at the Queen's Medical Centre in Nottingham," the mum added.
He had a computerised tomography (CT) scan at the QMC on Friday, August 19. In the afternoon, the family were told by doctors that they found a tumour in his brainstem.
Robert has been diagnosed with a DIPG - Diffuse Intrinsic Pontine Glioma - 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.
"Only one percent of children make it five years with this condition from diagnosis," Mrs Smith added. "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."
Mrs Smith 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 every night, and then gets up in the morning to observe the movement and noise. "I know it is happening," she added. "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 £2,855 to help "make Robert's journey wonderful". 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."
In aid to Robert's family, a community will come together on Saturday, October 8, to raise money for the cause. The 'Family Fundraising Day' will be held at The Corner Room from 11am until 4pm at The Corner Room, in Long Eaton.
Demi Brown, one of the organisers of the event who is a mum of five, 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."
The 28-year-old added: "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."
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