"It was on our wedding day that we noticed something was seriously wrong. Edward was 13 months old at the time. He’d been up crying all night and my mother-in-law phoned me in the morning and said “there’s something not right”. We had the wedding and cancelled our honeymoon the next day.
"The day after the wedding he was drifting in and out of consciousness, he wasn’t eating, he slept for 23 hours a day and I’d go to his cot and he looked plastic. He didn’t look like he was alive; didn’t look like he was breathing. He got progressively worse, and we went to our local hospital but they thought that it was just a severe case of chicken pox. As the chicken pox had gone through my other son, we knew that he was going to get it, but he showed really different symptoms. With chicken pox, obviously you’re covered in spots, but he wasn’t. He had one on his chin and a few internal, and the one on his chin was really septic, so we knew that it wasn’t the same kind of infection."
"I think it was the third time we went back that his ear had exploded with a load of green pus, and I refused to be let go because I knew something was really wrong. Edward had a lumbar puncture at our local hospital and the results showed he had meningitis. A later report revealed that he’d had encephalitis as well, and you could actually see that his head was really swollen. The test also revealed that he had osteomyelitis, so the infection had spread to his bones, and he needed surgery on his arm imminently."
Surgery for osteomyelitis
"Our hospital felt they needed a specialist and managed to get him a bed at GOSH. We were blue-lighted there at midnight on Wednesday night, two days after the diagnosis. He was rushed to surgery immediately after we arrived. They had to open the arm and drill the bone to clean it and get the infection out. It was over 40 degrees heat in there and he was only 13 months old, so trying to fight off that infection he was burning up and fitting. That was the first surgery he had done.
"The meningitis went about three weeks after treatment, but Edward was here for two months as an inpatient because there were a few complications after his surgery. The arm had to be re-operated on because of the extent of the infection, and it kept splitting open because he was a baby so he’d wriggle around a lot. From then, it was just a case of coming in for regular check-ups, until he was four years old. That was when we realised that his jaw had been affected by the osteomyelitis too."
Reconstructing Edward’s jaw
"Edward couldn’t open his mouth more than a centimetre. We used to think he just had a small mouth. Even my Nan would buy tiny little lollies because we thought he just had a tiny mouth. It was only when we were on holiday when he was four and I was watching people laugh and I watched how their jaws dropped and I thought ‘he can’t drop his jaw, I wonder why he can’t do that’. That’s when I took him back and we realised that the ball and socket in his jaw had been eaten away, so he couldn’t open his mouth.
"He underwent an operation in 2008 under his consultant, Peter Ayliffe, which involved taking one of his ribs out and putting it in his jaw to get it to open again. That was definitely the biggest milestone. His life’s improved so much since then because he can eat normally."
"Now, we come to GOSH every six months to see Peter Ayliffe in maxillofacial to get his check up on his jaw. We have been coming in to orthopaedics to see Christopher Bradish every two weeks recently because Edward’s just had his arm lengthened. The arm didn’t grow because the osteomyelitis affected the growth plates, so he’s had his right humerus lengthened by almost 6cm and now his arms are the same length. He’s just had his cast removed after four months so those visits should become less frequent.
"Aside from that, Edward takes indomethacin every day, which is an anti-inflammatory. He’s going to need a jaw transplant when he’s a bit older but we don’t know when, probably in a few years’ time. Edward is always a little bit apprehensive coming here as any child would be, but he’s definitely relaxed. The doctors and nurses are all so great with him which makes it less daunting."
"In terms of the effect it has on Edward’s day-to-day life, he has had people taking the mick at school but he was only young and we laugh about it now. The main hurdle at the moment is that he’s not been able to do sports for four months, but now he’s had his cast off hopefully he can get back into it. He also has to leave class five minutes early and be there five minutes early to avoid bumping his arm. He’s won two awards at school for dealing so well with his surgery. It’s an achievement still carrying on as normal as you can be in a school of thousands."
“If you’re coming to hospital don’t be scared because everyone’s really nice and they’re good at what they do. I stayed on Sky Ward and there’s an adolescent room for over 11s, I used to like using that. I’m in year 8 at school at the moment and PE is my favourite subject, so I’m looking forward to having my cast off and being able to join in again. I want to be an architect when I’m older because I like designing things and drawing, so I’m going to study art and maths at GCSE.”