Teen suffers from rare form of epilepsy



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.

newsdesk@thenational.ae

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This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home. 

List of officials:

Referees: Chris Broad, David Boon, Jeff Crowe, Andy Pycroft, Ranjan Madugalle and Richie Richardson.

Umpires: Aleem Dar, Kumara Dharmasena, Marais Erasmus, Chris Gaffaney, Ian Gould, Richard Illingworth, Richard Kettleborough, Nigel Llong, Bruce Oxenford, Ruchira Palliyaguruge, Sundaram Ravi, Paul Reiffel, Rod Tucker, Michael Gough, Joel Wilson and Paul Wilson.

The alternatives

• Founded in 2014, Telr is a payment aggregator and gateway with an office in Silicon Oasis. It’s e-commerce entry plan costs Dh349 monthly (plus VAT). QR codes direct customers to an online payment page and merchants can generate payments through messaging apps.

• Business Bay’s Pallapay claims 40,000-plus active merchants who can invoice customers and receive payment by card. Fees range from 1.99 per cent plus Dh1 per transaction depending on payment method and location, such as online or via UAE mobile.

• Tap started in May 2013 in Kuwait, allowing Middle East businesses to bill, accept, receive and make payments online “easier, faster and smoother” via goSell and goCollect. It supports more than 10,000 merchants. Monthly fees range from US$65-100, plus card charges of 2.75-3.75 per cent and Dh1.2 per sale.

2checkout’s “all-in-one payment gateway and merchant account” accepts payments in 200-plus markets for 2.4-3.9 per cent, plus a Dh1.2-Dh1.8 currency conversion charge. The US provider processes online shop and mobile transactions and has 17,000-plus active digital commerce users.

• PayPal is probably the best-known online goods payment method - usually used for eBay purchases -  but can be used to receive funds, providing everyone’s signed up. Costs from 2.9 per cent plus Dh1.2 per transaction.

Milestones on the road to union

1970

October 26: Bahrain withdraws from a proposal to create a federation of nine with the seven Trucial States and Qatar. 

December: Ahmed Al Suwaidi visits New York to discuss potential UN membership.

1971

March 1:  Alex Douglas Hume, Conservative foreign secretary confirms that Britain will leave the Gulf and “strongly supports” the creation of a Union of Arab Emirates.

July 12: Historic meeting at which Sheikh Zayed and Sheikh Rashid make a binding agreement to create what will become the UAE.

July 18: It is announced that the UAE will be formed from six emirates, with a proposed constitution signed. RAK is not yet part of the agreement.

August 6:  The fifth anniversary of Sheikh Zayed becoming Ruler of Abu Dhabi, with official celebrations deferred until later in the year.

August 15: Bahrain becomes independent.

September 3: Qatar becomes independent.

November 23-25: Meeting with Sheikh Zayed and Sheikh Rashid and senior British officials to fix December 2 as date of creation of the UAE.

November 29:  At 5.30pm Iranian forces seize the Greater and Lesser Tunbs by force.

November 30: Despite  a power sharing agreement, Tehran takes full control of Abu Musa. 

November 31: UK officials visit all six participating Emirates to formally end the Trucial States treaties

December 2: 11am, Dubai. New Supreme Council formally elects Sheikh Zayed as President. Treaty of Friendship signed with the UK. 11.30am. Flag raising ceremony at Union House and Al Manhal Palace in Abu Dhabi witnessed by Sheikh Khalifa, then Crown Prince of Abu Dhabi.

December 6: Arab League formally admits the UAE. The first British Ambassador presents his credentials to Sheikh Zayed.

December 9: UAE joins the United Nations.

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What is type-1 diabetes

Type 1 diabetes is a genetic and unavoidable condition, rather than the lifestyle-related type 2 diabetes.

It occurs mostly in people under 40 and a result of the pancreas failing to produce enough insulin to regulate blood sugars.

Too much or too little blood sugar can result in an attack where sufferers lose consciousness in serious cases.

Being overweight or obese increases the chances of developing the more common type 2 diabetes.