Teenager has gone from skull removal to incredible recovery and now the setting up of a charity – here’s the story of NeuroGuy  

A year after part of his skull was removed due to an infection that shifted his brain, an 18-year-old is now celebrating his incredible recovery from a life-changing illness by setting up a charity to help others going through similar experiences.

Guy Muscat Barron lived a childhood of illness, including over 20 cases of pneumonia.

But just as he was getting on with life, gaining strength, practising sports and was “the best he has ever been” – to the point that he went on his first “dream” family holiday to Iceland – a sinus infection developed into Encephalitis and he was rushed to hospital in a critical state.

His parents, Jo and Vince Muscat Barron, recall the harrowing days leading to his admission, wondering if they could have taken further action and reacted differently to what at first appeared to be a head cold and gastric flu, but seemed strange and worrying nonetheless.

They had already been reassured by three doctors, but when their son started forgetting things, swaying to walk towards them with rolling eyes, and then burning up and being unresponsive, they got scared and the boy – yellow and vomiting – was taken to hospital again. 

But this time, before they knew it, he was undergoing an emergency craniotomy to remove the infection that had travelled up and shifted his swelling brain. 

Muscat Barron fought for his life – a modified version of it when he came to, days later, to face a new reality.

His skull was missing, the left side of his body was paralysed and he was unable to communicate. He had miraculously survived the operation, but the outcome was unknown.

Jo Muscat Barron addressing guests at an event launching the NeuroGuy charity.

It has since been a year of recovery through physio, occupational and speech therapy and so many rehabilitation services to tap into that his mother wants everyone in need to be aware of them. 

The mental health aspect was not to be overlooked either, she said about Guy’s character-changing experience. 

His head was open for around six months and susceptible to infection until the surgeons refitted his harvested bone and covered it with skin that was so tightly stretched over it that he had to withstand that post-op agony too.

“I suffer from some memory loss and lose my train of thought most times. I often zone out and I am unable to do most sports I used to do,” said Guy, who was brought up in a sporty family, with a personal trainer and gym instructor for a mother.

But he has been “stoic”, and when his surgeons told him he could never play rugby or train in boxing again, he simply replied that he had always wanted to take up golf.It is this resilience and positive attitude that his parents now want to celebrate with the new charity platform.

Jo reproached herself in her darkest days, but she wants to “switch things up” and not let herself go down the guilt-tripping route of “what ifs” that she was spiralling into. 

A celebration cake at the charity's launch.

“Thinking of where we went wrong is all-consuming… My advice to parents is that you can never make too much fuss. Follow every instinct with your children if it does not feel right. If you have been to the doctor four times, go a fifth, and if you don’t have answers, ask again. I wish I had pushed for a scan when Guy first had symptoms. 

“There are so many cases where it is too late…” she trails off. 

Going through the motions of that time in ITU when she had what she feared was her last conversation with her son, she remembers whispering to him to fight on.

“We signed our boy away” and she spent the next eight hours sitting still in a corridor, like a “zombie”, flicking between encouraging him in her mind and fearing she would not see him again.

Now bursting with characteristic positive energy, Jo, who co-owns a mind and body summer programme for kids, aptly named Energise, is channelling her umph into supporting other patients through their recovery, both physically and mentally. 

Guy cutting the celebration cake.

Building on her son’s resilience and the support and resources they were fortunate to have, she is thinking of others in his position, who may not be armed with the tools and mental strength her family had to help them navigate a “mad year” and “totally horrendous” experience. 

There were times when she shouted and screamed, and demanded what she felt she was entitled to. The family was able to quickly source and hire their own ambulance when none were available to urgently transport their dying son from a private to a state hospital.

“These things should not happen, and I think about those patients who would not know how to go about fixing these issues,” Jo said.

“We could not take our eyes off Guy when he returned home. Luckily, we were able to keep on going, but what if you cannot and need to go to work?

“What if you do not know anyone and do not know how to communicate your needs with others?” 

The family has decided to turn their trauma into something positive and they organised a party on the operation’s anniversary to launch the NeuroGuy charity and “pay it forward”.

It was attended by the “life-saving phenomenal” medical teams, who have become their friends and whom they cannot thank enough. 

Follow every instinct with your children if it does not feel right

“They still stand with us,” they said, praising their dedication in the face of their own hardships in hospital.

“We were given hope when there was none,” Jo says about the little big gestures doctors made that kept them going.

“Guy is a big Arsenal fan, and his neurosurgeon once put up a poster of Tottenham in his hospital room. It is these jokes that made my boy live,” she said about going the extra mile, despite being stretched and exhausted.

In collaboration with Mario Sammut, charge nurse of Mater Dei’s Neurosurgical Ward, and Rachel Vella, Guy’s neuro physiotherapist, the new charity platform aims to raise donations for ongoing care within the ward and beyond.

Balloons forming the name of the new charity at the launch party.

Uninstalling Instagram 

Guy had so many things that motivated him and this, in turn, inspired him to help others.

He saw the effects of his help when he was asked to visit a young man in hospital, who was going through the same medical trauma and had no will to walk and talk.

“I told him to remove Instagram, which could depress you when you realise you can never have that life.

”The next day, the patient got out of bed and Guy realised his experience could be used positively. 

“I believe Malta has amazing healthcare workers. Everyone I came across in my journey to full recovery was amazing, from the surgeons to the cleaners.

“But I do not think they have all the equipment they need. The money will be used to make their lives a little easier and help others too in the process.”

We were given hope when there was none

Donations from friends and family, which poured in at the recent party, will go into purchasing footstools and proper reclining chairs for the Neuro Medical Ward.

The Muscat Barrons are now familiar with its needs, big and small, and have taken it upon themselves to supply it with whatever it requires – even if it is just an easier way for a patient to get on and off a bed.

NeuroGuy, a title that plays on the patient’s name but also pays tribute to his “amazing” doctors, will be setting up an information Facebook page on neuro health, while Guy is already putting together tips in a booklet on what to expect, based on past experience, for other post-neurosurgery patients. 

On the charity’s list is new physiotherapy equipment, as well as ⁠psychotherapy sessions after hospital.

Donations would also be pumped into “emergency care packages” and travel funds for patients in need. 

The charity is planning to raise awareness and funds through a variety of activities, including cycles and walks that also aim to get supporters “fitter, healthier and more engaged with each other”.