Parents of boy with extremely rare condition hope to be of support to others

The father of Javier Micallef looked on as his son, once predicted to remain in vegetative state from birth, braved the cold water unaided at a beach in the UK, where he was flown for therapy.
Swimming was a target that the family set two years ago, after this newspaper’s readers helped finance much-needed therapy for Javier, 9, who was born without a large portion of his brain.
Until he was seven, Javier used to move clumsily, often bumping into his surroundings, but nowadays he swims unaided.

This is one of the major achievements for the Micallef family, whose son was born 10 weeks premature since his head was the size of a full-term baby.
Javier is the only person in Malta – and one of three in Europe – diagnosed with rhombencephalosynapsis, a rare brain malformation. This makes it even more difficult for the family to find therapy closer to home.
Dorelle and Dennis Micallef were initially told their son could remain in a vegetative state but Mr Micallef clearly remembers Javier pulling up his leg when a nurse tickled his foot with a pen.
Eventually he did not need to be tube-fed and he started undergoing therapy at a few months old.

He has had to face so many operations,...