A 15-year-old boy has been left wheelchair-bound with a life-threatening liver disease – after doctors dismissed his symptoms SIX times saying he was just a “moody teenager.”
Sam Fitzgerald was a regular teenage boy only 18 months ago and enjoyed nothing more than a game of football with his friends at school.
But in March last year his mum, Jackie Courtney, 41, started to notice a change in her son who wasn’t being himself and had an increasingly short temper.
She took him to his GP on a monthly basis but on each occasion his problems were dismissed as “hormones” and “teenage problems”.
Sam got progressively worse and even when he started to slur his words and his toes and hands curled up bungling doctors told Jackie he was probably putting it on.
Eventually, Birmingham Children’s Hospital ran tests on Sam in September 2014 and gave him the earth-shattering diagnosis of Wilson’s disease – a rare genetic disorder.
The potentially fatal condition means copper accumulates in liver and brain tissues, leading to fits of rage and a loss of motor control.
Jackie, from Irthlingborough, Northants., says her son now faces an uncertain future due to the doctors blunders.
Jackie, who works as a cleaner, added: “Sam was a lovely boy, and he loved playing football with his friends.
“But in March last year his temper increased and things would make him really angry that just shouldn’t.
“Then he started to get pain in his hands so we went to the doctors and got blood tests in early April, but they didn’t show anything. We contacted his school to see if he was being bullied, but he wasn’t.
“His hands curled up and his speech started to slur a little bit – but the doctors just said ‘it’s a stage’ and ‘he’s putting it on’.”
“His mood was becoming completely unbearable – he was a different boy to the one I knew.
“But they were just putting it down to being a grumpy teenage boy.
“One day he got so upset he smashed his phone up and ran out of the house.
“I remember grabbing him just before he ran off – I looked into his eyes and I didn’t see my son there.
“The police found him and when they brought him back they asked if he had been drinking, because he was slurring his words.
“I explained he hadn’t been drinking, but I was pleased they saw he was slurring his words because Sam always said it was just us saying that.
“I took him to the doctors again, but they said maybe he just needs counselling.
“He lost his dad when he was five so they thought it was that resurfacing, but I said that just doesn’t add up.
“He came home from school in July and said he couldn’t walk properly, so I took off his shoes and his toes were all curled up.
“I straightened them out, but as soon as he started walking again they would spring right back under.
“The doctors said he must have broken his toes previously in one of his moments of rage, but when they x-rayed him it showed nothing.
“Again, they said it was just hormones and mood swings, and that he was probably curling them himself.
“I went back to his school in tears and said I didn’t know what to do. Mothers intuition was telling me this was not just a teenage boy being moody.”
“One of the teachers was so good, she turned to me and said: ‘If you think something’s wrong, don’t stop until the doctors find something.’
“They agreed that something just wasn’t right, and gave me a note to give to the doctors.
“Eventually a lady called Dr Watson, who was so kind and understanding, said she didn’t know what was wrong but she would make sure we found out.”
Sam was transferred to Kettering General Hospital in September where a consultant suggested he may have Wilson’s disease.
Birmingham Children’s Hospital then ran a liver biopsy, and confirmed the deadly illness, which affects 1 in 100,000 people.
Mum-of-three Jackie added: “The consultant said that most of the damage has been done to his brain, and the copper has accumulated in his basal ganglia – which controls fine motor movement.
“So his hands, his feet and his speech and also his ability to swallow are affected.
“He’s been put on medication that binds the copper so it can be flushed out, as well as some that prevents copper absorption in the first place.
“We were told that after six weeks he should start to get a bit better, but he has only got worse.
“His arms are locked out and he can’t move his legs so he has to use a wheelchair.
“He has a bell in his room that he uses to call me if he needs anything, and I have to carry him everywhere.”
“When we first went to the doctors he wasn’t slurring his words and his hands and toes hadn’t curled up.
“If he had been diagnosed then it wouldn’t have got as bad.
“If they had just felt his tummy they would have seen it was 18cm (7in) – an adult’s is meant to be 12cm (4.5in).
“But they just blamed it on hormones, they said he was a stroppy teenager.
“I knew it was more than mood swings, but they really wouldn’t listen to me.”
For people with severe Wilson’s disease, a liver transplant can sometimes help, but Sam’s liver is relatively healthy.
The problem lies in Sam’s brain so Jackie has applied for him to have Deep Brain Stimulation (DBS) in London.
Jackie said: “DBS is similar to a pace maker, but for the brain.
“The idea is it tricks the brain into thinking the brain is working properly, so the ‘brain pacemaker’ will send electric pulses to parts of the brain and bring back his motor functions.
“We’ve applied for this treatment, but we still haven’t been accepted. It could potentially save his life, because we don’t know how bad this is going to get.
“He’s lost two stone because he can’t eat, and he just sits in his room all day because he can’t move. He’s up and down at the moment and this would give him the boost he needs.
“He’s being so brave, but sometimes he’ll tell me he can’t fight it anymore and say things like ‘I’ll never get married, I’ll never have a job.'”
“His family, friends and school have been amazing, but we just really need a bit of luck.”
To make a donation to Sam visit the Facebook page “Keep Sam Smiling”: www.facebook.com/keepsamsmiling?fref=ts
