A family who lost two children in five months have told how their son’s ‘fighting spirit’ gave them the strength to carry on.
Ray McNulty, 33, and Amy Green, 28, of Mosney Fold, Walton-le-Dale, lost baby Thomas to a chromosome abnormality in September last year, aged only 17 days. Then, on February 2, son James died aged seven, having battled cerebral palsy from birth.
Nursery nurse Amy said: “People ask how we cope with it, but I’ve always had a positive outlook on life.
“Privately we grieve, but my theory is that there’s always somebody worse off than yourself and that’s how you get through it. And we called James our hero. He was and always will be our inspiration, and we hope to live our lives with the positively that James had.”
A lack of oxygen during birth caused James to suffer cerebral palsy, leaving him totally dependent on others, unable to talk, feed himself or sit up. At first, doctors feared he wouldn’t survive a week, then they said he wouldn’t make it to his first birthday.
Ray, a car refinisher, said: “James wasn’t text book. He was very unique medically and continued to baffle the doctors. He required a lot of medical intervention everyday such as physiotherapy, chest work and being fed through a tube.”
James wasn’t text book. He was very unique medically and continued to baffle the doctors. He required a lot of medical intervention everyday such as physiotherapy, chest work and being fed through a tube.Ray McNulty
Amy said: “He was in and out of hospital because his body couldn’t cope with getting bigger. Everytime he went in we had to be prepared for the worst. Several times we had what I call ‘the talk’ off doctors, but then a few days later he’d be wide awake and smiling. I used to say, ‘James, you don’t have to wait till we’ve had the talk to turn the corner’.”
The couple, who also have three-year-old daughter Bethany, discovered Amy was pregnant again in January 2014, as James’ health began to get steadily worse.
Amy said: “We said at the time that this happened to take our minds off James.
“We always thought that they worked together to get us through the difficulties. Then two weeks after Thomas died, James was taken into intensive care, so that took our minds off Thomas.”
Amy and Ray were both forced to leave their jobs to give James round the clock care, but tried at several times to go back to work with the help of carers.
Ray said: “It’s a hard life, we were thrown into it unexpectedly and we were young. In the early days we took turns sleeping by his side, because he couldn’t do simple things like re-position himself.”
Amy said: “But he kept us going with that smile.
“If we had to get up after just an hour’s sleep, we’d look at him and think that if he can do it, then so can we. He gave us the energy to do it.”
Last June the family, with help from carers, managed to take James on a trip to Disneyland Paris. Amy said: “There was a lot of sensory things for James and he met Spiderman. His face lit up, it was magical. It was like he’d just met his idol.”
At James’ funeral at St Patrick’s Church, Walton-le-Dale, mourners wore super-hero badges and his casket was Superman themed.
The order of service contained a quote by Superman actor Christopher Reeve, saying: “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” “That’s how we thought of James”, said Amy. “For such a short life, he’d gone through such a lot. People admired his fighting spirit and he was always smiley, nothing ever bothered him, he was always happy. He was quite cheeky too, he had this glint in his eye that made you think he was up to something.
“It was nice to be around him, his smile made everybody else smile.”
Ray said: “There’s a massive gap in our lives now and hours we don’t know how to fill.
“Everything was about James, our lives were planned around him from what appointments we needed to make, to whether the weather was suitable to take him out.
“We also had to move into a house big enough to take his equipment and one that had a bedroom downstairs. Now we’re in a house that’s far too big for us. We miss him so much, but at the same time he needed so much medical care, he was having to go through so much just to survive.”
The family have thanked all the medical staff who helped them care for James.
Ray said: “They’ve all been fantastic. They allowed us to be parents and not just carers.”
James was registered to the Coppice School in Bamber Bridge, but due to ill health he hadn’t attend school for over a year. Teacher Louise Moon taught James at home.
Amy said: “Louise is amazing and James always looked forward to her visits. Also Naomi from the paediatric outreach team has been involved with James and the family for many years. We’ve had a lot of people involved in our lives through the years and we very much appreciate all their involvement from carers, physiotherapist, specialists, nurses and doctors.”