AL AIN // Imagine for a minute you are a child with a chronic life-limiting disorder. You may never walk or even talk again, but mentally you are as alert as any of your peers.
This means you will be reliant on life-long care and not only can you never ride a bike or kick a football but you do not even have access to an education. You have, in effect, been abandoned in a hospital bed.
Amana Healthcare is trying to counteract such a situation by launching a special education programme at its Al Ain facility. The centre, a sort of nursing home, will offer specialised intensive care to chronically-ill patients.
The programme aims to teach some of its long-stay residents – many of whom have chronic diseases but are cognitively intact – subjects such as maths, English and science with the hope they can go on and contribute to society.
One child, Alia Al Meri, is flourishing under the programme.
As her teacher stands at the whiteboard, the 12-year-old sits alert in her wheelchair.
“Sunday, Monday, Tuesday,” she says, reeling off the different days of the week and the 12 months of the year before solving a maths equation.
Maths is her favourite subject, Alia says, smiling shyly.
The Emirati was born with Stuve-Wiedemann syndrome, a congenital bone dysplasia characterised by small stature, bowing of the long bones and other skeletal abnormalities.
She had one year of formal education before her family took her to the United States for corrective scoliosis surgery.
Unfortunately, the surgery was not a success and caused a spinal cord fracture.
“This resulted in quadriplegia,” says Nicola Costas, a British expatriate and an occupational therapist at the long-term care facility.
As a result, Alia was admitted as a long-term patient at Amana when it opened early last year.
Although she is mentally sound, the lack of speciliased care meant she was far behind her peers. Now things are different, and school is the best part of her day.
“She is very bright,” Ms Costas says. “Someone like Alia - the sky is the limit. Why can’t she, in the future, get a job or do whatever she wants to do? If she has access to that kind of education now why can’t she go to university? Why does it stop here?”
Children with chronic disorders are often left in hospital, given up on, she said. But it is important they have the chance to learn like any other child.
“For the children here, it gives them that access to independence.”
For those whose conditions have affected their speech, reading and writing skills will help them communicate their wants and needs to staff, she says.
As Alia responds to more questions in class, her father, Said Al Meri, a 40-year-old policeman in Al Ain, bounds in to shower his daughter with kisses and check on her progress.
He has never seen her this happy, he says.
“It is enough for me to see the smile of my daughter and know she is happy. Now I am happy.”
He, too, is adamant that now Alia has access to education she can be whatever she wants to be.
“She is studying - just like anyone at home. I am expecting anything. I am expecting she go to university and gets success there and maybe becomes a good doctor,” he says. “Dr Alia.”
“She is really moving fast,” says her teacher, Juanita Scheepers, a South African expatriate who heads Amana’s educational programme. She specialises in special needs education, and augmentative and alternative communication.
At the moment, classes are conducted on a one-on-one basis, but eventually pupils will be taught as a group.
jbell@thenational.ae