‘Nothing prepares you for the shock of news like that’
PARENTS REVEAL HORROR OF HEARING THEIR CHILD NEEDS BRAIN SURGERY – AND BACK NEW APPEAL
NOTHING can prepare a parent for news their child is critically ill.
Or that they will need to undergo complex brain surgery to save their life
Ava, Josh and Amelia were diagnosed with potentially fatal conditions before they were old enough to start school.
They are among the thousands of children to undergo brain surgery at the Royal Manchester Children’s Hospital each year.
As it stands, if one of them needed to be scanned during surgery, they face the risk of being moved out of theatre to another part of the hospital.
Neurosurgeons also have to wait until after the operation to see if it was successful.
But the hospital’s charity has launched one of its biggest-ever appeals to try to change this – and help save more youngsters like Ava, Josh and Amelia.
They want to raise £4m for a new intra-operative MRI (iMRI) scanning suite so surgeons can scan a child and get real-time view of the brain while they’re still on the operating table.
Specialists say it will mean less general anaesthetics and potentially fewer surgeries – as patients can transfer between scanner into surgery as many times as needed.
Ava, Josh and Amelia are backing the appeal along with their families. Here are their stories.
AVA LE BLANC was given just a 30 per cent chance of surviving after being diagnosed with a cancerous brain tumour when she was just two-years-old.
“Nothing prepares you for the shock of getting news like that,” her mum Charlene said.
“We were absolutely heartbroken.”
The now six-year-old, from Elton in Bury, began feeling dizzy and told her mum it felt like the room was spinning.
Ava became sick, lost her sense of balance and started holding her head tilted to one side.
The youngster was rushed to hospital where scans revealed a mass on her brain. Since her diagnosis, Ava has undergone five major brain surgeries, five gruelling and debilitating cycles of chemotherapy, followed by high-dose chemotherapy, and a stem cell transplant, as well as six weeks of specialist craniospinal radiotherapy. Charlene added: “It’s all she’s ever known. This new suite of equipment for brain surgery will make the world of difference to children like Ava, and her own journey would have been very different had the hospital had an iMRI scanner then.
“We were devastated last year when we learnt that Ava’s tumour has returned again.
“Following further treatment, the tumour has now reduced, so we are hopeful that it will continue to shrink. We can’t thank the amazing team at RMCH enough for everything they have done for our little girl.”
JOSH HUMPHRIES was two-years-old when doctors discovered a golf ball-sized tumour at the back of his brain.
His condition has had a profound impact on his life – he was six before he was able to take his first steps and relies on a walking frame or wheelchair to help him move around.
Josh gets tired very easily, his hands are weak, and he has recently been diagnosed with both autism and post-traumatic stress disorder.
The youngster, from Altrincham, is now 10 and has spent almost half of his life at RMCH. Josh has undergone three major brain surgeries – the first was to drain a build-up of fluid from his brain, and the next two to remove the tumour. But an MRI scan then revealed there was still a pea-sized mass on his brain, and Josh underwent 18 months of chemotherapy to shrink it. Despite everything he has been though, Josh still attends school full-time. .His mum Lisa Humphreys said: “It’s been a long haul, but we are very grateful just to have Josh. “This new suite of equipment for brain surgery at RMCH will make the world of difference to children like Josh, and his own journey would have been very different had the hospital had an iMRI scanner then. “It sounds amazing.”
AMELIA ABBOTT weighed only three pounds when she was born prematurely in June 2014 – half the size of her twin brother William.
When she was eight-weeks-old she became really poorly and was admitted to RMCH. Doctors discovered she had a complex condition where the hemispheres in her brain were filled with fluid, pus and infection.
Amelia, who was born in Wigan but now lives in Blackpool, was also diagnosed with a very rare form of meningitis called citrobacter koseri.
She was given less than 20 per cent chance of surviving.
“Never in a million years did I expect to hear the word meningitis and the bottom completely fell out of my world,” her mum Annmarie said.
“No words can describe how I felt, it’s something you never expect to hear as a parent.”
Amelia, who is now four, started treatment immediately and has since undergone more than 50 brain surgeries and had more than 150 scans.
Annmarie added: “At the moment Amelia is doing well. I am amazed at the resilience she has shown, you won’t find a happier little girl and I couldn’t be more proud of her.
“I can’t fault the staff at Royal Manchester Children’s Hospital.
“They have been absolutely amazing every step of the journey and have done everything they can for my little girl.
“This new iMRI scanner will have a massive impact on the lives of so many children treated at the hospital which is why we will do everything we can to support this appeal.”
Prof Stavros Stivaros is head of Paediatric Neuroradiology at RMCH.
He added: “This new iMRI scanner will revolutionise brain surgery here at Royal Manchester Children’s Hospital, giving us the capability to save even more children’s lives.
“It will mean that we can do all of the scanning while the child is still on the operating table, in a safe, sterile environment.”
To learn more about the iMRI Appeal and to get involved visit www.rmchcharity.org.uk/imri-appeal To donate now text IMRI00 (£AMOUNT) to 70070.
A new iMRI scanner will revolutionise brain surgery at the hospital Prof Stavros Stivaros