'Batman Ben' and the fight of his life
Five-year-old Ben Farrell is battling a rare form of cancer and doctors in Ireland say that their options are running out. Now his family are desperate to raise funds to send him to the US, where clinical trials might be his only hope of survival, writes Catherine Devine
'Do you know what you're doing?" asked Ben Farrell cheekily, when a consultant at Crumlin Hospital didn't stick to his regular routine of first "sleepy medication" and then anti-sickness tablets.
Little Ben, who's only five, is being treated at the Dublin children's hospital for a rare form of cancer.
His mum Valerie Farrell says her little boy is facing a battle no child should ever have to face, but despite it all, he's still smiling - and he's still wearing his beloved Batman mask, keeping everyone at the hospital entertained with his antics.
"He does it all while remaining happy and singing and cracking up the nurses. He is full of life and full of character," Valerie says. "He's a really happy little boy and we want to do everything we can to keep him that way."
Ben, from Finglas in north Dublin, was diagnosed with a rare form of cancer on Christmas Eve 2015. He has a stage IV Wilms tumour, which doctors here are struggling to treat, despite 19 rounds of radiotherapy.
"We are in the devastating position where our options are limited and have all but run out in Ireland," says Valerie.
"His treatment in Ireland is not working and we need to raise a lot of money in a short time for a clinical trial in America."
Ben is suffering from a form of cancer where the cells in his body are making his tumour particularly hard to treat.
And his family say that because his doctors here are stumped, they are now exploring every alternative option to do whatever they can to save little Ben's life.
"None of the consultants in Ireland has seen these cells before," says Valerie. "They've contacted America and Europe for treatments but nothing so far has been proven to work."
"There are clinical trials for Ben's cancer in the US that have shown promising results in the labs.
"They'll do testing on Ben's tumour and they'll see what's unusual about it and see if a particular treatment will work," she says. "It's a trial so the results haven't been proven, but we've few options left."
The treatment, which would take place in the Children's Hospital in Washington, costs an estimated €260,000, and the family have launched a Go Fund Me page to help raise the potentially life-saving cash.
"We'll have extra expenses too to get to Washington but if we can fund the treatment we'll find a way to cover the other costs," says Valerie.
The family's ordeal began at Christmas time last year when Ben began complaining of a sore tummy.
"We thought he just had a bug or it was an excuse for him to sleep in our bed," his mum recalls. "His pain wasn't excruciating, and it would come and go."
Valerie brought Ben to a doctor who told her he had acid reflux. But something told her that it wasn't that simple.
"Being a mother, I knew it wasn't acid reflux. My mammy instincts kicked in and I brought him straight to the hospital," says Valerie.
The day before Christmas Eve, Valerie got the news that is every parent's worst nightmare.
Doctors told her that she was right - it wasn't reflux. In fact, Ben had a tumour, and more than likely it would turn out to be cancerous.
"Never in a million years could I have imagined they would say that," she recalls. "It was the most devastating news. We were in shock. It couldn't be real. It didn't make sense.
"The next day on Christmas Eve we met our consultant and he told us there was a spot free in the theatre if we wanted to operate on Ben to confirm his tumour was cancerous, or we could go home and enjoy Christmas and come back afterwards.
"I asked the consultant was he a father and when he said he was, I asked what he would do if he was in our situation. He told us he would hit the ground running - and so we did. Ben went into surgery and started chemotherapy on Christmas Day. There was no Christmas in our house that year. We're blessed that Ben's two-year-old brother Jack is so young, so he doesn't understand what's happening - but he cries every time Ben leaves to go to the hospital."
On March 4 ,a lump was removed from Ben's kidney. It was the largest cancerous lump in his body, but the cancer has spread to other places.
And the progress of his illness was leaving doctors fighting a losing battle.
"After 19 rounds of radiotherapy, our consultant looked at us and said he didn't think he could cure Ben," Valerie says.
But the Farrells were not going to give up. They are now spearheading a campaign to fight as hard as they can for Ben, and exhaust every available avenue in pursuit of a potential cure. When Valerie heard about the trials in America, she knew immediately that the family had no choice but to try and get Ben on the programme.
"Going over to the US, I knew the costs were going to be through the roof, but we know what we need to do.
"We need to go as soon as possible because the trial will close. It mightn't stay open much longer."
The Children's Hospital in Washington, she says, must receive the funds before Ben can start his treatment there. But the deadline has just added urgency to their campaign.
"Faced with many uncertainties, one thing is clear to us," says Valerie. "We must fight. We must give Ben every chance no matter how far or what the cost.
"We know treatment in America runs into hundreds of thousands and we need help to give us more options."
Meanwhile, the Farrells are trying to keep life as normal as they can for the little boy. Valerie says that Ben was annoyed he missed Ireland play France in the Euros 2016 on Sunday, as he was in Crumlin for teatment. "He gets so excited at the national anthem and at the shouting when people score. He loves the Ireland team."
Valerie praised Ben's school, St Margaret's National School in Dublin, and his teacher Ms Keegan for being so "encouraging, inclusive and for making him feel so special" on the days he's well enough to attend school. "The whole community have come out in force. I never realised the support and kindness people are capable of giving.
"I've been overwhelmed by their support. People have even brought over food and these small gestures have blown me away."
You can donate money to help Ben's treatment in the US at www.gofundme.com/batmanben