For almost 10 months Sonia Gomes has sat by her son Dominic’s side, waiting for the day she can finally take him home from hospital.
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Dominic was born last September with two rare congenital conditions - Moebius Syndrome and Pierre Robin Syndrome - which means he can’t breathe without a machine or move the muscles in his face.
He can’t speak, cry, smile or eat and is severely developmentally delayed, but can communicate with his parents with his eyes.
‘‘When he opens his eyes and he looks at you, you can see his soul through his eyes and you can tell exactly what he’s feeling by looking at his eyes,’’ Ms Gomes said.
When Dominic was about six weeks old doctors told Ms Gomes and her partner Matt Portelli, who live in Berkeley, their son was severely disabled and his life support needed to be turned off.
‘‘The doctors said he would have an extremely short life span, but obviously they didn’t know Dominic,’’ Ms Gomes said.
‘‘They said their best recommendation was to turn off the machine but we obviously chose not to because he’s a human being and just because he’s going to have a disability doesn’t mean he doesn’t deserve a chance at life.’’
The couple argued their case, fighting to have a tracheostomy tube inserted into Dominic’s neck to help him breathe.
Months later, his condition is slowly improving.
He kicks wildly, can turn his head to recognise his nurses at Sydney Children’s Hospital and is developing a ‘‘cheeky’’ personality, Ms Gomes said.
‘‘He loves music and books, especially The Very Hungry Caterpillar, and he loves cuddles and he really loves lights - if he went to Vegas he would be a very happy baby,’’ she said.
After 10 months caring for her son from hospital rooms and hostel beds, Ms Gomes has been told she might be able to take Dominic home to Berkeley next month.
But first she and her partner have to set up their home according to strict hospital instructions and dedicate themselves to his 24-hour care.
They need to modify their house with ramps and wide access, buy three ventilators so there is always a back-up and meet the ongoing costs of providing oxygen, feeding formula and other equipment to keep Dominic alive. The ventilators alone could cost $75,000.
‘‘We will do whatever it takes to get him home because we just thought enough is enough, he’s been stable and happy ... let’s get him home and hope that he flourishes and experiences life a little bit, and then if he has to come back to hospital after that then that’s what we’ll do,’’ Ms Gomes said.
Doctors don’t know if Dominic will live for weeks or years once he’s home but Ms Gomes said it would be worth it to spend time at home with her son.
‘‘We want to take him to the beach, or go to the park ... but it would even be nice just to be able to sit at home with him and do the normal things people take for granted,’’ she said.
Ms Gomes and Mr Portelli’s friends and supporters have appealed to the public to help raise some of the money needed to bring Dominic home and, in August, Ray White Shellharbour Village will run a charity golf day called A Day For Dominic.
For more information or to donate contact Amanda Bonnici on 0408 966651 or direct credit Dominic Gomes-Portelli, BSB 633 000, account number 146347794.
