‘We’re in pieces’ say parents of boy, 7, given devastating diagnosis after mistaking his clumsiness for a ‘growth spurt’
A SCHOOLBOY has been given a devastating diagnosis after his parents noticed he kept bumping into furniture.
Seven-year-old Aubrey Rothery has Diffuse Intrinsic Pontine Glioma (DIPG), which affects 20 to 30 children in the UK each year.
DIPG is a tumour without a clear boundary that infiltrates healthy brain tissue and spreads between brain cells, the five-year survival rate is just one percent.
Parents Andrew Rothery, 54, and Samantha Hibbert, 51, noticed something was off with Aubrey when he kept losing his balance and knocking into things.
They initially put it down to a growth spurt, but when it kept happening they took him to hospital for an MRI.
Sadly, on February 23 he was diagnosed with a DIPG, which primarily affects children between five and nine.
Symptoms of the tumour include facial asymmetry, lack of coordination and loss of control of certain body movements, nausea, exhaustion, headaches and seizures.
Andrew and Samantha are now hoping to raise awareness of the rare condition while fundraising for Aubrey’s treatment.
They have already raised more than £10,000 towards a goal of £25,000.
Andrew, from Newton Abbot, Devon, said: “It was very subtle to start with, he was bumping into bits of furniture.
“He’d grown a lot and is quite gangly and lively and active and we thought he’s just not noticing where he’s going.
“All this happened within two days, our lives just turned upside down out of nowhere.
“It feels like in some ways hope is the most important thing we have to hold on to – the diagnosis is harsh, and the prognosis is pretty bleak.
“We were just in pieces, it was an incredible shock – this can’t be happening to our beloved beautiful boy.”
What is DIPG and can it be treated?
WHAT IS DIPG? It is a type of brain tumour that grows into other tissue so that cancer cells mix with healthy cells.
WHO IS AFFECTED BY IT? Primarily children aged between five and seven.
A sufferer may have problems with vision, weakness of facial muscles, arm and leg weakness, unstable balance and co-ordination, difficulties walking and speaking.
Fewer than ten per cent of children survive two years from diagnosis.
IS IT ALWAYS FATAL? Tragically, yes, because the tumours are virtually impossible to remove without damaging healthy brain tissue.
WHAT CAUSES DIPG? This is unknown.
HOW RARE IS IT? It is the second most common primary, high-grade brain tumour in children.
WHAT TREATMENT IS THERE? Radiotherapy. Also steroids to help reduce some of the pressure caused by the tumour.
There are worldwide clinical trials testing possible treatments.
Andrew, a community development worker, and Samantha, a full-time mum, say they first noticed something wasn’t right when Aubrey started bumping into furniture around the house and losing his balance.
When he was sent home from school because of his balance they took him to the doctor, thinking it was a viral infection.
Their GP advised they go to the hospital immediately and following an MRI on 23 February, doctors broke the tragic news to the parents.
Aubrey was rushed to Bristol Children’s Hospital where he is now receiving radiotherapy and steroids to stabilise his condition while they consider long-term treatment.
All this happened within two days, our lives just turned upside down out of nowhere.
Andrew Rothery
Before his diagnosis, Andrew says Aubrey was always on the go – loving being outside, playing on the trampoline and dancing.
But now he’s only able to play with his friends for 10 minutes before needing to rest and spends his days in bed.
The parents say they’re researching curative treatments via clinical trials – but Aubrey would need to undergo a biopsy to access the trials which is challenging due to the location and type of tumour.
“It’s devastating, we have responded as you do as a parent, you do whatever you can do for your children and that’s what we’re doing,” said Andrew.
“If you look at history of survival rates around this tumour, there aren’t many people who have survived.
“We’ve looked and haven’t found much evidence of survivors beyond five years but that doesn’t mean that can’t happen.
“What we’re focusing on is hope and positivity – it’s well known with cancer survivors that positivity and hope you will survive is absolutely key.
“We’re building is this sense of positivity, support and love from us and his family, friends and wider community.”