For four years little Luke Collins has fought for his life.
And now the borough youngster is preparing to undergo a treatment his parents are calling ‘last gasp’, in a desperate bid to save his life.
At just seven-months-old, Luke, from Holystone, was diagnosed with an inoperable brain tumour known as optic nerve glioma, that has since grown and attacked his optical nerve, leaving him permanently blind.
After years of treatment and chemotherapy to shrink the tumour, his family are now hoping a surgical procedure in Liverpool to remove part of the tumour, and follow up specialist radiotherapy that is only available in the United States, will save his life.
His mum, Fiona Collins, said: “It’s life or death.
“He’s had a life of hell, and we just want him right.
“There’s a lot that can go wrong with the operation, even the surgeon said it would be tricky, but it’s not a decision we have had to make, there was no choice.
“The tumour is just doing what it wants, and the chemo hasn’t really been doing it’s job.
“The tumour is getting bigger and we have to act.
“It sounds dramatic, but it is a life-saving operation, if it’s successful, he has a great chance of survival.
“If it’s unsuccessful he might not wake up.
“This treatment is last gasp.”
Following the surgery on Tuesday, Luke will need specialist proton beam radiotherapy, which the family are planning to travel to Florida for as it is not available in Britain.
“We’ve known for some time that we were heading for proton beam radiotherapy ‘in the future’,” said Fiona.
“But due to recent events, the distant future is now a closer reality.
“The radiotherapy will blast the tumour and kill it off, but it won’t be able to get it all, and there will still be a tumour.
“Even then the radiotherapy might affect him cognitively.
“We know we will have some difficult decisions to make in the next few weeks.
“We just want to set our gorgeous boy free from this life of misery and pain and to improve his quality of life.”
Fiona, who also has a six-year-old son Matthew, added: “It’s really hard for Matthew, he knows his brother is poorly and that he is having an operation, but he doesn’t understand the gravity of the situation.
“He has had to put up with a lot, and he has had to just take it all. This has been a very testing year already.”
The family has now started to fundraise for Luke’s Life Long Labour, to raise around £250,000 to help Luke once he has had the operation.
The money will go towards improving his quality of life, and providing equipment to help his visual impairment.
Luke’s friends at Holystone Primary School took part in a Wellie Waddle around the Rising Sun Country Park to kick off the fundraising.
Fiona added: “I cannot praise the nursery enough, they are fantastic.
“The teachers came to see him in hospital, and they’ve sent his favourite toys from nursery home for him, they’re fantastic.”
To donate to Luke’s Life Long Labour, visit www.gofundme.com/lukeslifelonglabour or for any queries or fundraising ideas, email firstname.lastname@example.org