Almost two months into the new scholastic year, four-year-old Mason Vella Attard is still at home, waiting for the government to provide a learning support educator (LSE) to allow him to go to school.
Mason was born with an extremely rare condition, which means he needs an LSE who is also a nurse, but despite being promised one in August, he still has no indication when he will be able to start school.
Mason has Congenital Central Hypoventilation Syndrome, which he shares with only around 1,000 other people in the world. He is the only one with the condition in Malta.
This means Mason’s body is unable to continue breathing autonomously when he is asleep.
Essentially, this means that each time he falls asleep, he ‘forgets’ to breathe, and if not secured to a breathing machine in time, he may die. He needs to be put on the equipment every time he sleeps.
Otherwise, during the day he leads a completely normal life.
His mother, Daniela Attard, said she has been making arrangements for Mason to start school since March.
By July, a psychological report had concluded he was fit to attend a mainstream school, but suggested he should be assigned a one-to-one LSE who is also a qualified nurse, to attend to his needs.
“One particular LSE was already identified and we agreed I would give her the necessary training to use the equipment,” Attard said.
“There is only one of this kind of equipment in Malta, and I have been specifically trained to use it in the UK, so we agreed I would train the LSE.
“When Mason was born, we lived for two years in the UK because there was no equipment that could keep him alive in Malta, until the Maltese government stepped in to help us acquire it and we could come back home.”
He needs an LSE who is also a nurse
Attard spent the rest of summer waiting to be called in for training, and despite chasing the authorities several times, she only received a call from the school on the eve of the first day.
“They said the school wasn’t a safe environment for Mason, and that they weren’t prepared to take him,” she said.
“I had prepared everything. I bought him a satchel, a uniform, I prepared lunch, he was good to go.”
Attard said that two weeks later, education and health professionals met with her and drafted a report about Mason’s needs in school.
But to this day, the report remains pending at the health and education ministries while Mason sits at home, waiting for the authorities to assign him an LSE.
“I found out the government lacks a system to provide a one-to-one nurse in state schools, and when I chase the authorities, I’m faced with a lot of red tape and bureaucracy.
“In the meantime, my son is at home, being denied his right to an education, friends and proper socialisation.
“I follow what his classmates are doing in school, and it breaks my heart to see him at home, unable to join them. I’m not doing this to harm some ministry or the government, but to raise awareness about a fault in the system and to work towards fixing it, so no other child will have to go through the same problem.”
Questions sent to the education ministry were not answered. A spokesperson for the health ministry said they have no nurse-LSEs because the occupation is, and always was, inexistent.