Picture of happiness
The seven-year-old has gone through the trauma of three separate bone marrow operations so the boys’ rare disease could be treated.
Because of her courage, Ciara was named Young Irish People of the Year. As her father Ben said, it’s a horror story in one sense and incredible in another.
“To give bone marrow once is hard, to give it twice is unusual, but to give it three times in one year is unheard of,” he said.
Her father’s pride in her character and strength is unmistakable. But Ben and his wife Geraldine are angry at the health service.
John, 5, and twins Edward and Rory, 3, have a rare illness called chronic granulomatous disease (CGM). The boys must be treated by a paediatric immunologist, but as there is none available in Ireland, they have to travel to Newcastle in England.
Crumlin hospital has applied to get its own paediatric immunologist every year for the last three years, but has been turned down.
“Do you know what the Department of Health said to us? They said parents could not request an immunologist, only hospitals could do that, and they had no request on the table at that time,” said Ben.
“That was technically true, but it was a white lie. They didn’t mention that Crumlin had been refused before. To me, that’s totally immoral.
“We elect these guys to represent us, so why did they allow the hospitals to get to the state they’re in? What will shake people up? The people of Ireland deserve better.”
A spokesperson for the Department of Health said the issue is being considered, with a view to hiring an immunologist for St James’s Hospital. He or she would also have links to Crumlin and Tallaght hospitals. The boys’ disease means that their immune system does not work properly, and so a normal infection could kill them.
The round-trip to Newcastle and back is almost 1,000 miles and takes three days. They do it regularly, as John needs a blood transfusion every three weeks, and the twins need regular check-ups.
Ben has applied for State assistance to cover some of the costs of bringing the boys to Newcastle, but was turned down.
A visiting immunologist comes to Ireland about once per month. But there is a 10-month waiting list to see him.
The last three years have been a nightmare for the McMahons. The problems started when John was six months’ old, and became very sick. He was sent to Crumlin hospital in Dublin, but doctors did not know what was wrong with him. His father spent six months by his bedside, sleeping on a two-inch thick mattress on a concrete floor. “Then when he was two, he developed an abscess on his liver that came out through his stomach,” said Ben. “He was sent back to Crumlin. There was a visiting paediatric immunologist there, and he diagnosed John with the disease.”
The twins were diagnosed with CGD soon after. John had to have half his liver and his gall bladder removed, but the twins could be treated with antibiotics because the disease was identified early.
Ben, Geraldine and their sons spent 18 months in England as the boys got 24-hour care. Ciara stayed at home with an aunt.
“I was lucky, I got a leave of absence from work,” said Ben. “We got an amazing amount of support, and there were people praying for us all over the world.”
But bad as things have been for the MacMahons, they could have been worse. They know of two families in Ireland who cannot find bone-marrow match for their children.
“It’s been a traumatic two years, but we’re lucky to be where we are today,” Ben said.
“Hopefully, in two or three months John will be able to meet more people. To look at him, you’d think he was a normal little boy, he’s boisterous and bright and lively. But if you lifted up his shirt you would see the scar shaped like a Mercedes logo on his stomach.
“He’s suffered so much,” said Ben, his voice cracking with emotion. “One night in Crumlin they had to try five times to get the needle in his hand because there so many needle marks there already, and I had to hold him down. He’s had 22 or 23 operations.
“As a parent, I wonder why there are no specialists. In a sense, it’s a one-day wonder. People read it and put it away. When are people going to say ‘enough is enough, we have to solve these problems?”
