DUBAI // At 18-years of age Zara Kavarana has slept every night of her life in her parents’ bedroom.
The teenager suffers from a very rare condition called Dravet syndrome, a form of epilepsy that begins in infancy and means she regularly suffers violent seizures.
The risk of death from one of these seizures is so great that she sleeps in a bed adjoined to her parent’s bed, so they can be right there to treat her should an attack happen.
In Zara’s case her seizures began when she was just four months old.
Mother Gulshan Kavarana, who moved to Dubai 19 years ago from India, said of Zara’s first seizure: “It was unimaginable for any parent because the seizure went on and on and she just collapsed in my arms.
“My husband Zeheer said ‘she is gone’. You just cannot imagine the pain.”
Doctors were baffled. Zara was suffering with up to 15 seizures a day lasting anywhere between 10 minutes to a half-hour at a time.
“It was really rare - no one knew what was happening,” said Ms Kavarana.
Initially diagnosed with epilepsy, Zara was only found to have Dravet syndrome, which affects about one in 15,700 people, years later.
Things took turn for the worse when Zara turned three. “It was like a switch,” said Ms Kavarana. “Beforehand, she was smiling, talking, walking and running. Then out of the blue she stopped everything she was doing before.
“Until this day she does not cry or smile. She can now walk after intense therapy. But that is it.”
Zara is non-verbal and has severe learning disabilities.
Ms Kavarana wishes people would treat those with disabilities “like any other normal human being”.
As a teacher with Mawaheb from Beautiful People, an art studio for adults with special needs, Ms Kavarana recently took her students to Singapore to educate high-school pupils about people with disabilities.
The response they were met with, she said, was “amazing”. Unfortunately, the response on the flight home was not the same.
“One of the air hostesses asked me if I would like soft toys for ‘the children’,” she said. “But there were no children - just adults.”
This, she said, is a common problem those with disabilities face.
“Everyone presumes because they are special needs they are like kids,” she said. But many are adults and we have to respect them and treat them as such.”
Ms Kavarana would also ask for people not to look at mothers of those that have a rare condition with pity or shame.
“Don’t look at us with pity and horror - we have an amazing life,” she said. “I am just a mum doing whatever any other mum does.”
Ms Kavarana runs the Special Families Support (SFS) Group, which helps families cope with special needs children. For more information visit www.sfs-group.net.
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