Rex was born in Dénia, Spain, in March 2022. According to the standard checks carried out by the health services, he was born fit and healthy.

However, within just a few weeks, Rebecca and I began to feel that something was not quite right. Rex was not feeding properly, rarely appeared to focus on anything and was not showing many of the behaviours we expected to see in a young baby.

We raised our concerns, but we were reassured that everything was fine. We were told that, as first-time parents, we were probably worrying too much.

As time passed, Rex began missing important developmental milestones. He was unable to roll over, crawl or play, and he showed very little curiosity about the world around him. Once again, we were told that there was nothing to worry about and that we simply needed to keep trying.

Several months later, while we were on our first family holiday in Mallorca, everything changed.

Rex experienced his first epileptic seizure. At the time, neither we nor the hotel staff understood what was happening. We believed he might have been choking on saliva.

He was taken to the hospital in Inca before being transferred to a children’s hospital in Palma, where he was diagnosed with epilepsy. From that moment, our holiday and our lives changed forever.

When we returned home, Rex attended appointments at our local hospital in Dénia. He was then referred to La Fe University Hospital in Valencia for extensive testing to find out what was happening.

He underwent genetic testing, EEGs, reflex examinations, MRI scans and many other assessments. We then had to wait three months for the results. They were the longest three months of our lives.

When the genetic test results finally arrived, Rex was diagnosed with PIGA-CDG. He was the first and only recorded case in Spain.

We knew nothing about the condition. Very few people did, and even today, there is still so much that is not understood. We searched Google and joined Facebook groups, desperate to find information and connect with other families. Eventually, we found the answers we were looking for, but none of them brought us comfort.

PIGA-CDG is an extremely rare and life-limiting condition. No boy known to have been diagnosed with it has reached adulthood, and many pass away before the age of four. The condition can also cause many other serious health complications.

In Rex’s case, these included:

• Epilepsy, including absence, focal, tonic-clonic and grand mal seizures
• Hypotonia, causing low muscle tone in his neck
• Significant difficulties with both gross and fine motor skills
• A sleep disorder
• Cerebellar atrophy
• Paroxysmal nocturnal haemoglobinuria, also known as PNH

Some of Rex’s symptoms could be managed with medication. Unfortunately, he developed a high tolerance to many of the drugs he was given. After only a few days, they would often become less effective, meaning the dosage had to be increased or the medication replaced with something stronger.

When Rex had his nasogastric tube fitted, he became an expert at pulling it out. The moment we took our eyes off him, he would grab it. This meant trips to Dénia Hospital became an almost daily occurrence, sometimes even twice a day.

Despite everything he faced, Rex was so much more than his diagnosis.

He loved mango purée and chocolate pudding. He also loved stealing some of his Aunty Nic’s fish whenever she had fish and chips.

His favourite programmes included Dragons: Rescue Riders, Fifi and the Flowertots, CoComelon, Fireman Sam, and Thomas and Friends.

He was cheeky, loving and full of personality. He loved a good cuddle, especially a really tight one, and he brought a smile to everyone who met him.

He also made sure that life was never quiet.

Our days often started at around 1 a.m. and did not finish until 11 p.m. Naps were almost unheard of. While lying in his cot, Rex would kick the wall, spin himself around, kick the slats and babble away as loudly as possible.

He always kept us awake with his shenanigans, but those are now some of the memories we treasure most.

Rex fought bravely for almost a year against the challenges caused by his condition. Through it all, he continued to show us his cheeky personality, his strength and his love.

On 29 September 2023, at 1:37 a.m., Rex passed away peacefully in his sleep.

He brought happiness, laughter and love into our lives, and into the lives of everyone who had the privilege of meeting him.

May you forever rest in peace, our beautiful boy.