Life means pain for seven-year-old Javier Micallef who was born without a large portion of his brain and had to face countless, surgeries, injections and hospital visits.
“He links life to pain and, every now and then he hurts himself to know he is living… He would, for example, bang his head against a door. We are hoping to change this with a new therapy available in the UK. It can help him change this connection,” his parents Dorelle and Dennis Micallef said.
This interactive metronome therapy is offered at Praxis Therapy Centre, a private clinic in York. But the couple do not have the €14,000 to cover the three weeks of intensive therapy, accommodation and flights.
He manages to do all he does with a few brain fragments
Puttinu Cares Foundation offered to help them but is not in a position to cover the full amount.
Javier is the only person in Malta – and one of three in Europe – diagnosed with rhombencephalosynapsis, a rare brain malformation. Due to the rare nature of the condition his parents do not know who to turn to.
“It’s not like we can put a support group together. We are alone. There needs to be more awareness on rare cases,” Mr Micallef said.
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 celebrospinal fluid destroyed nearly all his brain, leaving him with parts of the right brain.
He needed an operation to insert a shunt in the head to drain the fluid – something that would remain embedded in his brain for good. The chances of survival were slim, but Javier pulled through.
His parents have been determined to ensure he lives as complete a life as possible so he started attending therapy since he was six months.
Javier can speak a few words and can communicate what he wants with his parents. He also loves listening to nursery rhymes, and singing them, he loves the pool and playing in the multi-sensory area his parents made for him at home.
“He manages to do all he does with a few brain fragments,” his mother said.
Throughout these years, Javier had to undergo two major operations. In 2009 he had to replace the blocked shunt and in 2012 he underwent heart surgery at Great Ormond Street Hospital in the UK.
Apart from that the boy had to face countless blood tests, take daily growth hormone injections and visit the hospital hundreds of times. This often led to regression and frustration.
Recently his parents found out that the new therapy helped people like him – according to feedback they got from a rhombencephalosynapsis closed Facebook group that has some 35 members.
After carrying out some research they found that this therapy was available in the UK. They contacted the clinic that accepted their case and booked a temporary appointment for next month.
Anyone who wishes to contact the Micallef family can do so by sending an e-mail on dendorjav@hotmail.com or calling 9989 0783.