Niko Szabo has gone through more than most children his age. At birth his brain was starved of oxygen and he was rushed to intensive care where his parents were told he was unlikely to survive the week.
But incredibly, thanks to neonatal staff at Singleton Hospital in Swansea, a special therapeutic cooling machine and his own determination, not only did he pull through but he was discharged just 16 days later.
"The next 12 months were both nerve-wracking and wonderful at the same time," admitted his mum Tanya. "Niko blossomed into a gorgeous little boy and had regular check-ups and physio. There were concerns about his sight, yet tests revealed he could see. He was meeting all of his milestones so needed no more input."
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But fast forward 13 months and Niko would suffer a massive seizure lasting more than one-and-a-half hours - and went on to lose the use of the left side of his body. An MRI scan, according to the family, showed "catastrophic results".
The tot had a condition called arteriovenous malformations (AVM), a tangle of abnormal and poorly-developed blood vessels which caused a haemorrhage on the right side of his brain. Within 24 hours Niko was in a "life or death position" for the second time in his short life.
Tanya, from Swansea, recalled: "He wouldn't eat and had to be carried everywhere. Compared to the bouncy one-year-old he had been at his first birthday party, this little boy was unrecognisable and we were very concerned. A large bleed would require imminent open brain surgery and could be fatal, and the permanent damage caused by the existing bleeds was unknown."
Tanya said discussions took place between hospitals in Swansea, Cardiff, Birmingham and London regarding who was best-equipped to help Niko. "His condition was rare, and so it was a critical puzzle," she added.
"A number of solutions were discussed, mostly surrounding dealing with the symptoms of the AVM versus correcting the AVM itself. Great Ormond Street in London stepped forward and agreed to operate."
Staff at Great Ormond Street agreed to carry out a non-invasive surgery via a catheter angiogram (a small camera) and embolisation, a way of blocking abnormal blood vessels. The aim would be to block the paths between the connected arteries and veins, forcing blood to flow in the right direction.
Tanya added: "Niko was still having regular seizures, and so with the risk that he might have a large bleed on his brain en route to London, the quickest route was planned for him via helicopter. Niko hovered above the ground in the helicopter, sleeping in my arms as he was waved off by his dad, Mamgu and family.”
It was discovered that Niko had more than 50 faulty connections between veins and arteries which caused fluid build-up and bleeds, but the surgery ultimately proved a resounding success. "The excess blood had started to drain and reroute to flow where it should go, reducing the negative impact within hours of surgery," Tanya added.
"By 2am the following morning he was standing up in his cot banging the walls and keeping the other children awake. It was the one time we didn't try to quieten him down. We could not have been happier - our son was back."
Despite a full rehabilitation plan being prepared for Niko at Swansea's Morriston Hospital, he was so well that within two days of his operation he was discharged home.
"Now, at nearly four years old, Niko is doing amazingly," Tanya added. "He now has an energetic little sister called Lili and has started nursery school.
"He is a bright and chatty little boy who absolutely loves his bike, enjoys swimming and also rugby. Looking at him now you would never expect that he had the start that he had. His family love him so much and are just ridiculously proud of his spark and tenacity."
On Sunday, September 18 Niko ran 1km to raise awareness for babies and families who have experienced time in a neonatal unit. Funds will go to both Singleton Hospital neonatal unit and Great Ormond Street.
"So often, we take health for granted. Niko experienced a worst-case scenario, yet there will be other children and families who go through something similar. We want to let these people know that they are not alone. There is support out there," Tanya added.
To donate please go to www.justgiving.com/crowdfunding/niko-szabo?utm_term=46jkwRYjQ
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