I have survived
A nine-year-old boy with the most unlikely of survival stories
Xavier Micallef’s birth was unlikely, if not impossible. His chance of survival practically nonexistent. Yet, this nine-year-old boy from Mosta seems to have surpassed all logic and science.
While his mother, Dorelle, was four months into her pregnancy, the doctors told her that the child she was bearing in her womb would not make it through the whole pregnancy. The months of pregnancy passed and the doctors came in with more warnings. “He will probably die once we cut the umbilical cord. He is only surviving because of you.” Despite all the odds, baby Xavier was born prematurely, but alive.
Xavier suffers from a very rare condition. The name is as complex as the condition itself – Rhombencephalosynapsis prognosis, a condition associated with brain malformation.
“It’s a condition which literally stops the brain from developing. The back part of Xavier’s brain is in fact undeveloped,” she told The Malta Independent as Xavier was kept busy playing with his mother.
In Xavier’s case, this brain malformation affected his balance and motor skills. The child can walk, but slightly imbalanced. Thanks to daily exercise and therapy, his movement
“Doctors told me he would not survive, but so far, we have enjoyed his presence for more than nine years.”
The first indications of the conditions manifested itself when, still in the womb, the baby’s head started to grow abnormally. It appeared that the parts where the brain never developed were instead getting filled up with water. This same water presence in the head destroys parts of the brain and in some cases, can cause facial deformation.
“We felt terrible but somehow determined to give life a chance. The doctors even told us of the option to abort the pregnancy abroad, but we didn’t want to. We decided to leave it in God’s hand if the baby is to survive or not,” Dorselle says
Daily life for Dorselle and her husband changed completely. They had to redesign their apartment to make room for the child’s therapy room and make every other part of the house adaptable to Xavier’s condition. Kitchen tops are completely bare and no loose items are left on the floor to avoid any accidents just in case the child gets a tantrum, which are synonymous with the condition.
Dorselle has to stay at home as Xavier needs 24-hour supervision. Even at school, Xavier has the constant help of a Learning Support Assistant.
“He goes to a special school and he enjoys it a lot. Sometimes we have to deal with his behavioural problems, but we’re coping.”
Every year, Xavier’s family have to travel to the UK for a month packed with therapy. The cost for this yearly exercise, which started some three years ago, is between €16,000 to €20,000. This therapy is vital for Xavier’s development as they help him improve his mobility skills, verbal communication and muscle use. The Community Chest Fund helps out with the expenses related to Xavier’s therapy.
The condition is so rare that doctors are still developing more methods and exercises to help patients progress. Between 1914 and 2014, there were only 50 people affected by the condition in the UK. Right now there are only around three reported cases of this condition in Europe.
Despite all the challenges, the therapy is working. “Before, Xavier used to have up to five pills for anti-anxiety. Today, he’s living without them completely.”
His mother’s concern now is his independence and skills he needs to learn for the future. “We want him to be as independent as possible, one step at a time. We teach him how to make a simple sandwich. They might sound very basic, but every step forward is progress for us.”
The Fun Run this Sunday organised by the Malta Community Chest Fund helps families like Xavier’s with their financial struggles to cope with the rare condition.