Seven-year-old Javier Micallef, who was born without a large portion of his brain, will travel to the UK this week to start the therapy that could drastically improve his life.
His parents, Dennis and Dorelle, were touched and amazed by the strong response of the public who helped them make this trip possible after The Sunday Times of Malta carried Javier’s story two weeks ago.
We never thought people would be so helpful. It’s incredible
“We never thought people would be so helpful. It’s incredible. The phone did not stop ringing and we received countless e-mails from people who wanted to help our son. Many organised fundraising activities in his name,” Mr Micallef said.
The public helped the family raise the money they need to send their son to a clinic in UK that offers a new form of treatment. They leave on Thursday for three weeks of intensive therapy.
Javier is the only person in Malta – and one of three in Europe – diagnosed with rhombencephalosynapsis, a rare brain malformation.
When he was born, a scan revealed his hindbrain was missing and the celebrospinal fluid destroyed nearly all his brain, leaving him with parts of the right brain.
As a result of his condition, Javier had to undergo two major operations and face countless blood tests. He also takes daily growth hormone injections. This life of constant hospital visits, injections and surgeries caused Javier to link life with pain. He often hurts himself, by for example, banging his head, so that he knows he is alive, his parents said.
The family is hoping the therapy will address this by helping him change this life-pain connection.
The interactive metronome therapy is offered at Praxis Therapy Centre, a private clinic in York. But, until two weeks ago, the couple did not have the €14,000 to cover the three weeks of intensive therapy, accommodation and flights. Now, they managed to collect almost the full amount.
“We are hoping that this therapy will help stimulate his brain and create pathways so that he can improve his speech, learn to be tolerant and share. He often gets frustrated and we hope that this therapy will allow him to be calmer,” his father said. “As his parents we want to be able to have a clear conscience and be able to say we tried everything we could to achieve a better life for our son,” he said.
Anyone who wishes to contact the Micallef family can do so by sending an e-mail todendorjav@hotmail.com or calling 9989 0783.