An Emirati teenager who has defied the odds since having a rare genetic disorder diagnosed has had successful kidney transplant surgery in the UAE.
Zayed Al Kaabi’s family, from Al Ain, were told he would never be able to talk or move his body because he suffered from Joubert syndrome, which affects about one in 100,000 newborn children worldwide.
The debilitating disorder affects brain development and also contributes to a range of other health issues including, as in Zayed’s case, kidney failure.
The 14-year-old’s parents refused to accept their son’s outlook would be so bleak. Zayed can now speak and is able to walk after years of therapy and rehabilitation and is able to attend a special needs school.
The syndrome is characterised by underdevelopment of parts of the brain that control balance and co-ordination and a malformed connection between the brain and spinal cord.
Developmental abilities, in particular language and motor skills, are delayed and mild to severe intellectual disability is common.
“When my son was first diagnosed, the doctor told us that he would never speak or move,” his mother, Maryam Al Kaabi, 39, said.
He faced a new blow, however, when his kidneys began to deteriorate, leading his family to seek transplant surgery abroad, a decision they said they regret.
Hospitals in the United States and Germany declined to provide treatment, citing concerns over his long-term care after surgery because he has special needs.
The family went to Germany in December last year for treatment but the hospital declined to operate, despite a donor being in place.
The family were offered a lifeline in the UAE, when Sheikh Khalifa Medical City in Abu Dhabi agreed to do the transplant.
On October 18, Zayed underwent a successful kidney transplant at the hospital.
The kidney was donated by his father and is the first transplant for a child with Joubert syndrome in Abu Dhabi.
“I preferred to go to Germany because Zayed’s disease was so rare, but unfortunately that was the worst decision I had ever made,” Mrs Al Kaabi said.
Dr Muhammad Badar Zaman, head of general, vascular and transplant surgery at Sheikh Khalifa Medical City, carried out the procedure.
“You are best served in your own country,” Dr Zaman said.
“I think the concern that other hospitals had is with perioperative and long-term care.”
Perioperative care is the care given before and after surgery.
“With a child like Zayed with special needs, you never know what to expect.
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“You don’t know for example how they would react to pain or being confined to an ICU bed for several days or how they react to anything and everything.”
Dr Zaman believes that the special bond he developed with Zayed assisted in the success of the operation.
“I must admit that Zayed was a very good boy and I believe that is because of the trust he had in me because of the relationship we developed.”
He said Zayed’s kidney is now functioning well.
“I don’t think I would have been able to go through this without the support of my parents and my mother, who looked after my other son while I was in Germany,” Mrs Al Kaabi said.
Her youngest son Abdulla, 9, also suffers from Joubert syndrome and she is worried that he too will need a transplant soon.
Due to the variety of genes affected by the disorder, the syndrome is widely thought to be under-diagnosed.
Mrs Al Kaabi is delighted with the care her son received.
“I don’t know why in 2018 and after all the advances and successes we see at our local hospitals, we still have little faith in them and believe that going abroad is better,” she said.
“When I decided to have the transplant done in the UAE, almost every person asked, ‘are you sure you want to have it done in the UAE?’.
“Yes, I am 100 per cent sure of my decision because I have seen what other countries have to offer and it doesn’t even compare to the excellent health services and care we have here.”
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The%20specs
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What can victims do?
Always use only regulated platforms
Stop all transactions and communication on suspicion
Save all evidence (screenshots, chat logs, transaction IDs)
Report to local authorities
Warn others to prevent further harm
Courtesy: Crystal Intelligence
Benefits of first-time home buyers' scheme
- Priority access to new homes from participating developers
- Discounts on sales price of off-plan units
- Flexible payment plans from developers
- Mortgages with better interest rates, faster approval times and reduced fees
- DLD registration fee can be paid through banks or credit cards at zero interest rates
Key facilities
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- Premier League-standard football pitch
- 400m Olympic running track
- NBA-spec basketball court with auditorium
- 600-seat auditorium
- Spaces for historical and cultural exploration
- An elevated football field that doubles as a helipad
- Specialist robotics and science laboratories
- AR and VR-enabled learning centres
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WORLD CUP SQUAD
Dimuth Karunaratne (Captain), Angelo Mathews, Avishka Fernando, Lahiru Thirimanne, Kusal Mendis (wk), Kusal Perera (wk), Dhananjaya de Silva, Thisara Perera, Isuru Udana, Jeffrey Vandersay, Jeevan Mendis, Milinda Siriwardana, Lasith Malinga, Suranga Lakmal, Nuwan Pradeep
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Name: Back to Games and Boardgame Space
Started: Back to Games (2015); Boardgame Space (Mark Azzam became co-founder in 2017)
Founder: Back to Games (Mr Azzam); Boardgame Space (Mr Azzam and Feras Al Bastaki)
Based: Dubai and Abu Dhabi
Industry: Back to Games (retail); Boardgame Space (wholesale and distribution)
Funding: Back to Games: self-funded by Mr Azzam with Dh1.3 million; Mr Azzam invested Dh250,000 in Boardgame Space
Growth: Back to Games: from 300 products in 2015 to 7,000 in 2019; Boardgame Space: from 34 games in 2017 to 3,500 in 2019
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The Sand Castle
Director: Matty Brown
Stars: Nadine Labaki, Ziad Bakri, Zain Al Rafeea, Riman Al Rafeea
Rating: 2.5/5
The specs: 2018 BMW R nineT Scrambler
Price, base / as tested Dh57,000
Engine 1,170cc air/oil-cooled flat twin four-stroke engine
Transmission Six-speed gearbox
Power 110hp) @ 7,750rpm
Torque 116Nm @ 6,000rpm
Fuel economy, combined 5.3L / 100km
Bridgerton%20season%20three%20-%20part%20one
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• Invest in the resilience of military space systems.
• Number of active reserves should be increased by 20%
• More F-35 fighter jets required in the next decade
• New “hybrid Navy” with AUKUS submarines and autonomous vessels
Andor
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Pros%20and%20cons%20of%20BNPL
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Dengue%20fever%20symptoms
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Biog
Age: 50
Known as the UAE’s strongest man
Favourite dish: “Everything and sea food”
Hobbies: Drawing, basketball and poetry
Favourite car: Any classic car
Favourite superhero: The Hulk original
UAE rugby season
FIXTURES
West Asia Premiership
Dubai Hurricanes v Dubai Knights Eagles
Dubai Tigers v Bahrain
Jebel Ali Dragons v Abu Dhabi Harlequins
UAE Division 1
Dubai Sharks v Dubai Hurricanes II
Al Ain Amblers v Dubai Knights Eagles II
Dubai Tigers II v Abu Dhabi Saracens
Jebel Ali Dragons II v Abu Dhabi Harlequins II
Sharjah Wanderers v Dubai Exiles II
LAST SEASON
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Winners – Bahrain
Runners-up – Dubai Exiles
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Winners – Abu Dhabi Harlequins
Runners-up – Jebel Ali Dragons
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Runners-up – Abu Dhabi Harlequins
UAE Conference
Winners – Dubai Tigers
Runners-up – Al Ain Amblers
Score
New Zealand 266 for 9 in 50 overs
Pakistan 219 all out in 47.2 overs
New Zealand win by 47 runs
New Zealand lead three-match ODI series 1-0
Next match: Zayed Cricket Stadium, Abu Dhabi, Friday
Company%20profile
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2 Bill Gates $98.3 billion
3 Bernard Arnault $83.1 billion
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5 Amancio Ortega $67.9 billion
6 Mark Zuckerberg $67.3 billion
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8 Larry Ellison $56.1 billion
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10 Carlos Slim $55.2 billion
