A teenage boy, the only person in Malta diagnosed with a rare brain condition, passed away unexpectedly last Tuesday night as his parents slept next to him.

Javier Micallef, 14, was born without a large portion of his brain. Pain was part of his life.

On Tuesday, he was feeling poorly before going to bed – nothing unusual given his disability.

So his parents, Dorelle and Dennis Micallef, decided to spend the night by his side in his room.

“He did not have fever but looked weak,” his father said.

“At about 3am my wife woke me up in a panic. She told me Javier was not breathing. He was lifeless.

“It was such a shock. We called the ambulance. He had died.”

An autopsy is yet to determine the exact cause of death.

Javier was the only person in Malta diagnosed with rhombencephalosynapsis. Throughout his young life he underwent several operations, endless therapy and took daily injections.

“His death was so sudden. We feel as though we have just returned from a 14-year missionary work expedition but had to leave all we worked for behind us.

“We’re exhausted. These years have been tough,” his father said from the family’s home in Mosta.

“A part of us is happy he will no longer have to be in pain. We did our best to take him to places he enjoyed – like the sea and parks – but life was not too enjoyable for him…

“Now that he is gone we feel the emptiness. Who will fill it? Who will fill his bedroom? His bed slippers that are still there? Who will play with his soft toys? Who will wear his Tweety mask still hanging there?” his father said, voice trembling. 

Javier was born by caesarean section 10 weeks premature since his head was the size of a full-term baby. A scan revealed his hindbrain was missing and the cerebrospinal fluid had destroyed nearly all his brain, leaving him with only parts of the right brain.

We feel as though we have just returned from a 14-year missionary work expedition but had to leave all we worked for behind us

He needed an operation to insert a shunt in the head and drain the fluid – something that would remain embedded in his brain for good. His chances of survival were slim.

But Javier pulled through.

His parents were determined to ensure he lived as complete a life as possible, so he started attending therapy at six months of age.

Javier could speak a few words and communicate what he wanted to his parents. He also loved singing. Happy Birthday was one of his favourite songs.

“This year, when he turned 14 on April 10, he was over the moon since due to COVID restrictions he celebrated his birthday four times. He had four cakes: one with each of the grandparents, another at school and one at respite. He loved cakes and sparkles on cakes.”

In his short life, Javier had to undergo two major operations. In 2009 his blocked shunt was replaced and in 2012 he underwent heart surgery at Great Ormond Street Hospital in the UK.

Then there were the countless blood tests, daily growth hormone injections and hundreds of visits to hospital.

In 2014 his parents found out about a therapy called interactive metronome therapy offered at Praxis Therapy Centre, a private clinic in York, UK. But the couple did not have the €14,000 to cover the three weeks of intensive therapy, accommodation and flights.

With the help of public donations, Puttinu Cares and the Malta Community Chest Fund, the family set off to York for their first of five sessions of therapy focused on the vestibular and proprioception senses: the vestibular sense explains the perception of the body in relation to gravity, movement and balance while proprioception is the sense of being aware of your own body. 

The couple saw big leaps. They knew however that, with such a severe disability, the future was uncertain.

They were still unprepared for his sudden loss.

“Now we understand how parents of children with disabilities feel when they lose them. Before he passed away we lived in fear of what would happen to him when we passed away.

“We have lost someone but are determined to keep helping others.

“Having a child with such a severe disability was very difficult for us parents. We would not have made it this far without the help of Puttinu Cares, the Malta Community Chest Fund and all the doctors and people who helped.”

A lot of fundraising events have been cancelled due to COVID-19, Javier’s parents observe.

“We wish for something good to come out of Javier’s death. His life shows how badly needed these organisations are. We still believe it and will continue to support them even now that he is gone.”

To find out how to help visit puttinucares.org and www.mccff.org.mt.