When Taina Grech noticed that her mentally disabled sister-in-law was gaining unexplained weight she worried something might be wrong and took her to a doctor.
January we found out she’s pregnant. In February Mariah was born
Nothing could prepare her for what she was about to hear – that her sister-in-law, Corinne, was eight months pregnant with a child who, it later emerged, was also disabled.
“I couldn’t believe it when they did the ultrasound and there was a fully grown baby. It was a huge shock that changed our family dynamics. January we found out she’s pregnant. In February Mariah was born… As it happened Corinne met a boyfriend, they were in love and she became pregnant without even knowing it,” Ms Grech recalls.
Baby Mariah suffers from global developmental delay and has a missing chromosome. She is developing slowly and, although she is 13 months old, she is only as developed as a six-month-old child.
The family still do not know what the implications of the missing chromosome are as tests are still being carried out. They are hoping that the genetic origin will be traced to the mother since the father wants to remain out of their lives.
All this has placed enormous emotional and financial stress on Ms Grech and her family.
Ms Grech, her husband Marlon and their three children – age 11, 15 and 20 – moved back to Malta, from Finland, seven years ago to look after Mr Grech’s sister, Corinne, after her mother passed away. The only other option was putting her in an institution given that her father had died some years earlier.
“It’s been an eventful seven years,” Ms Grech says as she sits in the living room of their San Ġwann apartment where Mariah sits in her baby walker concentrating on the colourful cartoons on Baby TV.
Apart from the unexpected birth of Mariah, a year ago Mr Grech suffered heart failure.
He is now back at work, as a chef, and is the sole breadwinner for the family-of-six (the eldest son lives alone).
Ms Grech, a qualified beauty therapist, had to stop working to look after Corinne and Mariah.
The family would like Corinne to find a part-time job as that would mean some extra income and would free up Ms Grech to go back to work.
At the moment Corinne gets a disability pension and children’s allowance which, technically, is meant to cover her and Mariah’s expenses.
Over the past years she has been through several employment courses and participated in employment programmes.
However, once the programmes are over, she is back without a job.
“I get angry when I hear them speaking on TV about how much help there is for people with disabilities… I’ve been seven years trying to get her a part-time job,” Mr Grech says.
The lack of employment opportunities for disabled people is one of the main concerns often raised by the National Commission Persons With Disability.
Last week newly appointed Social Policy Minister Marie-Louise Coleiro Preca and the Parliamentary Secretary for disability rights Franco Mercieca said they were taking stock of the situation and wanted to allocate more resources to employment.
Ms Grech said she hoped that the new Government would deliver on this important issue.
Sitting near her daughter, Corinne says: “I’ll do anything for my daughter… I wish to work. I can clean and sort out papers and put them in envelopes. I tried working before… but then they fire me.”
The Grechs recently got some good news: they will be able to become Mariah’s foster carers, something they were initially told was not possible with Corinne living under the same roof.
This will allow them to take on legal responsibility and be recognised officially as carers. It will also allow them access to social services available to foster parents and some financial help.
“We just want to do everything in the child’s interest… She is such a happy child. She deserves more,” Ms Grech says as she bounces Mariah on her knee while her mother prepares a bottle.