‘Our dream is for a normal life’

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Every day is a battle for baby George but he still manages to smile through it.

Cara Houchen spoke to his proud parents who are determined to find a cure for his mystery illness.

Little George Johnson has been fighting for his life since the moment he was born.

The two-year-old suffers from a rare motility condition which means he struggles to eat or drink and survives by being fed through his heart.

This brave little boy has spent 90 per cent of his life in hospital and his dad Neil, who is from Springwell but now lives an Wallasey on The Wirrell, says their lives have been put on hold while they try to deal with George’s condition.

“It’s every parent’s worst nightmare, seeing your child so unwell and not being able to do anything for them,” he said.

“It’s heartbreaking – my wife and I were parents that took for granted that our second child would be as healthy as our first.

“We now realise what a gift it is to have a healthy child.

“Seeing him suffer and seeing him in pain is tough but we have to stay strong. If he can keep going than so can we.”

Until George was born the couple had no idea there was a problem. It wasn’t a trouble free pregnancy – mum Emma had suffered from placenta previa (the placenta forms too close to the cervix and causes complications) and there were a few times when they thought she had miscarried but after an elected C-section on December 14, 2009, their gorgeous baby boy came into the world.

Neil said: “George was 7lb 10oz and everything seemed fine, so I went home and Emma went onto the ward. That was when everything changed.”

On the ward Emma woke up find George blue and rigid. It was a terrifying experience for Neil, 31, and Emma, 30, and it was the start of a long and emotional journey. The couple brought George home from the hospital but his breathing was still an issue.

“Emma sensed that something wasn’t right,” said Neil. “He stopped breathing on numerous occasions and when we took him to the doctors they said it was quite common. We thought this was strange as our daughter had never suffered from this problem.

“We noticed that it seemed to be when he was feeding. He couldn’t latch on and when he was bottle-fed he could barely take any in so it took a long time to feed him.”

“It was really traumatic, Emma was terrified he would stop breathing so she never slept. She would put him in his swing chair and sit and watch him all night.”

George was finally referred to Alderhey children’s hospital in Liverpool. He was already three weeks old and Emma and Neil had been coping with his frightening condition on their own with no medical help up until that point.

Once in hospital George experienced the first of many operations and doctors discovered he had a floppy larynx. They operated there and then and within four weeks George had been sent home.

Neil said: “It was a red herring. What they did during the operation meant that any milk George was having was going straight onto his lungs.

“He ended up in hospital for seven months and after a number of tests he ended up with a central line being surgically inserted to his main artery and being fed by TPN (Total Parental Nutrition) and a gastrostomy peg in his tummy.

“The operation took place at Great Ormond Street Hospital in London. I remember it well as it was my 30th birthday.”

George’s condition meant that he was unable to eat and drink normally and was completely nil by mouth for over 12 months. If he tried to eat, it caused him agonising pain.

Up until a month ago George was fed through a “central line” that leads directly through his chest and into his heart.

Each night, nutrients and fats had to be pumped into his blood stream. He was attached to the machine for 14 hours a night and given medicines via his line throughout the day and night too.

Now, however, doctors are feeding him through the peg in his stomach for a trial period. It’s a waiting game to find out if this is a permanent solution.

Neil explained: “George has a unique swallow. He has taught himself to drink and eat a little bit. Every time he swallows he has to suck on his dummy. He won’t drink without it – it’s really unusual.

“We were told to try him on thick foods like mashed potato.

“We started to give him little bits but it isn’t enough for him to survive on. We just wanted him to know he could still taste.”

Having a Central Line inserted (he has had this procedure repeated six times due to infection) was one of many procedures George has undergone in his short life and so far he has been under general anesthetic 45 times.

He has moved from the hospital in Liverpool to see specialists in Great Ormond Street, as the family fought for a second opinion.

They managed to get their son into the children’s hospital where they have spent more than a year trying to get answers.

Recently there has been a positive development for George – it’s possible that he might have a condition called Dysautonomia.

It affects the central nervous system and when this malfunctions it results in major problems for the digestive system, heart rate, blood pressure and can cause fatigue.

Neil said: “We don’t know the specific type which George suffers from. It’s like cancer in the way that it covers a very broad spectrum of symptoms.

“We don’t know which type George has but tests are ongoing to find out exactly what type he has.”

Discovering that George may have Dysautonomia has led doctors down a different route of testing – they have taken blood from George and his parents and it has been sent to America for analysis, but they are still awaiting the results.

It’s not just been a rollercoaster ride for Neil, Emma and George – their daughter Ava has also had to cope with her little brother going in and out of hospital.

Neil explained: “Ava was only 18 months when he first went into hospital. She was crying everytime we left her at her grandparents to be with George in hospital – it was incredibly difficult being so far away from our little girl,.

“We then made the decision that we had to get her down to London with us and we had to get through this awful experience as a family.”

“George and Ava are best of friends, she mothers him and he idolises his big sister and during the rare occasions when he is at home they are inseparable.”

In December last year George became really unwell – he was fitting, his temperature was sky high and his blood showed that the infection level in his body was 310 instead of the average which is 15.

“He looked awful,” said Neil. “He was really unwell I thought we were going to lose him.

“He had yeast in his blood, which can be a killer. The line into his heart was removed as the infection had got inside and it was getting bigger and stronger and attacking him internally.

“Its the closest we have ever come to losing him but he made a remarkable recovery which just shows how strong he is.”

When George is not in Great Ormond Street the couple feel really isolated. Neil explained: “The level of expertise of the staff is amazing but once we leave it’s out of sight out of mind – there have been times when we needed help and advice.

“Because of his condition George wakes up every 20 minutes. Emma is up with him so she is always shattered but we always keep each other going.

“What people need to know is he isn’t just a sick child, he’s an absolute joy. He’s got a great little personality and an infectious laugh and he never gives up.”

George’s story has touched the hearts of many people. He has more than 4,000 followers on his Facebook page which was set up by Emma, who wanted to raise awareness of her son’s condition and she wanted to raise money for Great Ormond Street.

Neil said: “The messages we’ve had are overwhelming. When the chips are down, to know people are supporting you, rooting for you, really does help when you’re in the hospital room and you feel detached from the world.

“It’s taken a huge toll on us both physically and emotionally, we live in hospitals and at Great Ormond Street we had to fight to keep the accommodation we had as they continually needed it for other families.”

He added: “It sounds awful but before George we used to lead a normal life. We would go to work, go away on holidays and we want do that again, but you adapt because you’ll do anything to get them better.”

In May last year, inspired by George’s bravery, 22 men from Wearside signed up for a white collar boxing event to raise money to help the family.

The event raised more than £30,000 and Neil was overwhelmed by the support from his fellow Mackems.

He said: “We’ll never forget that night – we were gobsmacked. We never thought there would be a 1,000 people there for our son. It was a bit surreal.

“The money has meant we can kit out his room with the specialist equipment he needs. It helps us afford to take him down to Great Ormond Street every month and we can build up a fund ready for when the blood tests come back as we may have to go to America.”

What is easy to forget is George is a normal little boy. He loves Peppa Pig and Thomas the Tank Engine and doing all the things other two-year-olds do.

All Neil and Emma want is for him to experience life without pain and they dream of being able to sit down and eat a meal as a family.

Neil said: “Now we know he has a condition not just a problem with his gut, our hope is that we can start to understand it and work out how to deal with it and ideally cure it.”

l If you want to show your support for George Johnson and his family go to www.wix.com/teamgeorge01/teamgeorge#!