Cian Corrigan was a typical little boy who loved nothing more than kicking a ball around with his friends.
He was fun loving and, with his infectious smile, the Dungannon youngster was a joy to be around.
However, when he was just 11 years old, his parents were dealt a devastating blow when doctors discovered he was suffering from an extremely rare — and incurable — form of cancer.
Their ordeal was even more heartbreaking as they watched their once active son spend the last few months of his short life confined to a wheelchair unable to do anything for himself.
Through it all, and in the difficult years since his death, the family has been supported by the Northern Ireland Children’s Hospice.
Their story is a solemn reminder to us all that we may one day rely upon the services of this very inspirational charity.
His dad, Jarlath, said: “I have to say that the hospice service is invaluable, especially in those last few days they were brilliant. Words can’t describe what they do.
‘We know we are not alone and they have helped us to realise our feelings are normal.”
Cian was first diagnosed in November 2008.
Jarlath continued: “He just woke up one morning and had weakness in his arm.
“We thought he had slept on it funny and sent him to school but when he came home he said we would have to take him to the doctor because everyone was laughing at him as he couldn’t catch the ball.
“We took him straight around to A&E at Craigavon. They did a few tests and couldn’t find anything wrong with him so they told us to come back on Friday.
“He was doing the first part of his 11-plus that day so they told us not to worry and to bring him back the following Monday instead which we did.
“They did more tests and still couldn’t find anything wrong which is when they asked us to come back the following day for an emergency MRI scan as they said they thought there might be a problem with his neck.
“That is the point where I got worried. Up until then I really didn’t think it was anything serious.”
The scan revealed Cian was suffering from a spinal tumour and he was rushed straight to Royal Belfast Hospital for Sick Children to undergo surgery.
However, in a cruel twist, the tumour ruptured an hour before Cian was due to go to theatre.
“He was supposed to go in at 8am and at 7am he said his legs felt funny so he was rushed straight to theatre. It was a seven-hour operation and he was basically left a quadriplegic.
“At first they told us the tumour was benign and we were delighted but three days later we got the news that it was a grade four tumour and they gave him two weeks to live. He was only 11.
“It was so surreal. We couldn’t believe it was happening, we asked them over and over if they were sure there was nothing they could do.”
Their shock and disbelief at the prognosis was multiplied because Cian was one of only a handful of people in the world to ever be diagnosed with such a tumour.
“In the end, Cian lived for four and a half months,” continued his dad.
“The hospice got involved when he came out of the operating theatre and they have been there throughout.
“Cian needed care 24 hours a day.
“He was in a wheelchair and he couldn’t speak.
“He was aware of what was going on around him but we never told him he was going to die.
“We thought he was going through enough already. It used to frustrate him that he couldn’t walk or play with his friends.
“He was actually supposed to go up to the hospice for respite and suffered a bleed in his head. It turned out the cancer was in his brain.
“The hospice has really helped us since Cian died to help us work through our feelings, emotions and anger. We know we’re not alone and they have helped us to realise that our feelings are normal.
“I never thought I would need the hospice,” Jarlath reflected, adding: “You really don’t give it a second thought until you’re in a situation where you need them. Then you see the wonderful job they do.”
The delight an ill child can discover in water
By Lisa Smyth
With most of the children who come to the hospice unlikely to reach adulthood, the staff there are determined that they should be supported to enjoy their lives to the full.
They want the children to experience as much as possible and in doing so create as many positive memories as they can for the families they leave behind.
Staff are skilled in helping even the most profoundly disabled children with activities such as swimming and painting.
Ruth Graham, who has worked as a physiotherapist at the hospice for 11 years, said: “We can meet all of the medical needs of the children at the hospice, no matter how complex they are.
“This means parents can bring their children here for planned breaks and know that their children will be safe.
“I have a very philosophical attitude and I believe that while you are alive you should be living and I believe this is very much the approach at the hospice.
“We see what the parents need and we see what the children need and we do everything to meet those needs.
“I think that’s one of the things we do here — we can make things possible that aren’t easy to achieve outside the hospice setting.
“I think a lot of what we do is making memories ... helping the children make paintings using their hands and feet so the parents have them as a keepsake.
“The hydrotherapy pool is a wonderful tool and it is a privilege to work with the children in there.
“It doesn’t matter how severe the disability is; I have seen children who have major disabilities get into the water and swim faster than an able-bodied person.
“It really is incredible and watching their response when they go into the water is amazing. You can’t describe it when a child who very rarely responds reacts to the sensation of the water.”
Janet Clarke, a staff nurse who has worked at the hospice since 2001, said it is the time that the staff can dedicate to the children that attracted her to the post.
“This is something you don’t ordinarily get to do in a hospital,” she said.
“We look after their medical needs, we change syringe drivers, give them their medication, do everything they need like that, but we also get time to build a relationship with the children.
“We are able to do artwork with the children, we help them create memories for their families and I think that is so important.
“We can work at their own pace, there is no rush, and I am so glad we are able to do that.”