IT’S every parent’s worst nightmare – realising it costs too much to save their child’s life.
But that’s the reality for heartbroken Amber Schofield and Ben Proctor whose son, Charlie, desperately needs a liver transplant.
The initial cost of his transplant was set to be around £300,000 – it’s now triple that amount[/caption]
Charlie was diagnosed with hepatoblastoma – a rare tumour that begins in the liver – in February 2016.
Since then Amber and Ben have desperately been crowdfunding for a liver transplant at Cincinnati Children’s Hospital in Ohio.
But this week they decided to close their fundraising page after learning that it’ll now cost £855,000.
Despite having several rounds of chemo and surgery, the cancer has now spread to his lungs.
Charlie’s parents first noticed something was wrong when his stomach hardened[/caption]
His cancer is so rare than only one in a million children have it[/caption]
Doctors initially told Amber and Ben, from Church, Lancashire that Charlie’s last hope was a liver transplant which would cost around £300,000.
But after learning that it’d actually cost three times that amount, they’ve taken the heartbreaking decision to stop raising the cash.
“We realised we could never raise this in time and therefore are stopping all fundraising events,” the pair wrote in a Facebook post on Tuesday.
“They are to (sic) much time and effort for a small amount of what we now need.”
Amber first noticed something was wrong with Charlie back in 2016, when the little boy’s stomach began to harden and his veins became visible.
He was diagnosed at the Blackburn Royal Hospital with hepatoblastoma – a childhood cancer so rare that it’s thought to affect fewer than one in a million children.
The only treatment for hepatoblastoma in the UK is chemotherapy – which Charlie had more than 20 rounds of.
In May 2017, he then had an operation at Birmingham Children’s Hospital to remove the tumours in his liver – after which, doctors said he was in remission.
But earlier this month Charlie developed a rash which doctors initially believed was a reaction from the chemo.
They told his parents that if Charlie developed more rashes, he wouldn’t be able to undergo any more rounds of the treatment.
In May 2017, doctors announced that Charlie was finally in remission[/caption]
But before long, his parents discovered a rash on Charlie’s skin[/caption]
A few days later, experts at Royal Manchester Children’s Hospital told Amber and Ben that Charlie had developed several small tumours on his liver – ruling out any hope of further surgery.
The only option left was a liver transplant, which the family hoped to get in the US from Dr James Geller at Cincinnati Children’s Hospital in Ohio.
They initially costed the treatment up to be around £300,000 and went out setting up a GoFundMe page which has so far raised £97,207 of their original £315,000 goal.
But they soon found out that they’d actually have to raise over £850,000.
Hepatoblastoma – the cancer which targets children under three-years-old
Despite it being the most common malignant liver tumour in young children, hepatoblastoma is still an incredibly rare form of cancer, affecting fewer than one in a million kids.
The exact cause is unknown, but children who are born prematurely are thought to be of a higher risk.
If the entire liver has been attacked, a transplant may be needed.
Symptoms of the disease include:
- Swollen abdomen
- Stomach pain
- Yellow skin
After so many rounds, Charlie can’t receive any more chemotherapy[/caption]
Writing on their Facebook page, Charlie’s Chapter, the pair said: “With a heavy heart, I have to now let you all know the devastating news.
“The chemotherapy Charlie is on isn’t going to cure him, yes it’s slowing the growth down but it also makes him so poorly to the point it will kill him.
“As much as it tears our hearts to bits we have to face reality, we have to see what is best for Charlie.
“We know he would rather make some magical memories whilst he can than keep making him poorly with treatment that isn’t going to save him.
“Tomorrow me and Ben will be going to Manchester hospital on our own to pick up Charlie’s end of life oral chemo that he will take at home.
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“This won’t cure him but it will slow down the growth of his cancer without the horrible side effects so he can still be him.
“We haven’t given up. We never will. We are trying him with home treatments and as much as we can to help save him but we have to try and come to terms with the outcome most likely to happen.”
The couple stress that while the events have stopped, they’re still fundraising.
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