Six-year-old ‘bubbly’ Northampton boy loses sight due to ‘tennis ball sized’ benign brain tumour
Riley’s dad says he is ‘cracking on’ and has even started to learn to read braille
A young Northampton boy who lost his sight due to a rare condition which led to a benign tumour his brain is adapting to life without one of his senses.
Riley Fraser, who lives at Billing Aquadrome with his mum, dad and older brother, started to have vision problems last year.
An MRI scan found a tumour the ‘size of a tennis ball’ on Riley’s brain and the youngster then endured a seven hour operation to remove as much of the tumour as possible.
Following the operation in June 2020, Riley was diagnosed with Tuberous Sclerosis (TSC), which is a rare condition whereby mainly benign tumours are more likely to develop on vital organs.
The condition is one that the six-year-old will have to live with for the rest of his life, as is the sight loss, which was a result of the size of the tumour as pressure built up around Riley’s optic nerves.
Ben Fraser, Riley’s dad, said: “For the first couple of months, he kept asking when his sight would come back, but we didn’t want to make any promises so we had to tell him that it was unlikely to come back.
“Riley always talked about wanting to do certain things when he grows up, so it’s hard as now he will be limited by his sight.
“As a family it has been tough especially as when Riley went for his operation we were still in the first national lockdown.
“It was dreadful for the first six months, but we are looking on the bright side now and other than the blindness, Riley is fairly untouched by it all.”
Riley has started attending school again, although only part-time as he is easily fatigued.
At school, he has begun learning braille and also has a cane to help him get about.
Ben added: “The biggest thing to come out of this is that Riley is just cracking on with it. He has always been like that.
“People instantly love him and that has been the same in the hospital. He is such a bubbly and positive boy.
“He is doing well learning braille and he has a cane to get used to, although he’s still small enough for us to help him get around.”
Since Riley’s diagnosis, the family has been trying to apply for a house, which would allow for more space than their current static home so that Riley can move around safely.
When they first started applying for a house, Riley was in a wheelchair so there were special requirements needed.
Now that he is not wheelchair bound and as he has been told he will need to learn how to use stairs again, the additional needs are less and as the family is deemed to be adequately housed already, it is proving difficult for them to find a house to provide Riley with more comfort.
In support, a close family friend decided to set up an online fundraiser to help the family raise enough money for a house deposit.
“At first, I was hesitant. I’m not the sort of person to accept charity lightly or to swallow my pride,” Ben continued.
“It has been so nice to see so many people getting behind us, though.
“It is all about making Riley as comfortable as possible now and helping him get the best start in life.”
Riley’s condition is different within every person who suffers from it, but the youngster will continue to have regular scans to make sure the tumour is not growing.
To help the family buy a home, visit the GoFundMe page here.
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