A young Syrian girl with spinal muscular atrophy received Dh7 million gene therapy paid for by Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, on Friday at Dubai Health's Al Jalila Children’s Hospital.
Holding a small giraffe toy, and trying to smile, Yaqeen Kankar, sat in the treatment room on Friday morning, waiting for the arrival of doctors and her medicine. Two weeks ago, the family made a video appeal on social media for help to save the two-year-old.
The office of Sheikh Mohammed called the family to say Sheikh Mohammed would cover the cost of the treatment.
Yaqeen's uncle, Ibrahim Abdulaziz Faroj, told The National the family was relieved to know she could now have a normal life.
“We didn’t sleep for three days after receiving the happy news that Sheikh Mohammed would cover the cost,” Mr Faroj, 23, said. “It’s a mix of feelings between joy, anticipation and anxiety. We want her to grow normally like any other child. Thanks to Dubai, the dream becomes true.”
He had posted a video holding Yaqeen, explaining her condition and asking for help to pay for the treatment, which is available at only a few centres in the world.
“We know that she has no time. We didn’t have other way than to plea for help as we couldn’t afford the cost,” Mr Faroj said.
Eight months before moving to Dubai, doctors in Syria treating Yaqeen diagnosed spinal muscular atrophy, a genetic disorder that weakens and wastes muscles.
“I was posting about her for several months until we received the happy call,” Mr Faroj said. “It was the best gift ever. We all cried with joy when we heard the news. This action is not strange for the UAE and its rulers, who always help people in desperate need.”
Doctors gave Yaqeen only months to live without the treatment.
Dr Haitham Elbashir, paediatric neurorehabilitation consultant at Al Jalila Children’s Hospital, told The National: “We examined her a week ago and did all the laboratory tests. I'm very happy to say that the medicine is going to be delivered to her today.”
Yaqeen underwent the one-hour procedure on Friday and will stay in the hospital for 24 hours. She can then return with her parents to their home in Sharjah.
Doctors said they were optimistic it would be successful, but it could take up to three months to see the final results.
“She will need to continue with us for three months because that's the treatment period where we need to follow her regularly,” said Dr Elbashir.
“Her condition is stable, but she's got some weakness and hopefully the treatment will help to get her better. I’m very optimistic."
SMA affects the nerve cells that transmit impulses to the muscles and weakens the limbs. It makes walking difficult or impossible and creates problems with swallowing, as well as breathing.
The treatment offered by Al Jalila Children's Hospital, called Zolgensma, is given once and is a form of gene therapy. It was approved by the US Food and Drug Administration four years ago and has been described as the most expensive drug in the world.
The hospital has completed more than 100 treatments for patients with SMA, said Dr Mohamed Al Awadhi, executive director of the Dubai Health Women and Children’s Campus.
UAE currency: the story behind the money in your pockets
The specs
Engine: 8.0-litre, quad-turbo 16-cylinder
Transmission: 7-speed auto
0-100kmh 2.3 seconds
0-200kmh 5.5 seconds
0-300kmh 11.6 seconds
Power: 1500hp
Torque: 1600Nm
Price: Dh13,400,000
On sale: now
Islamophobia definition
A widely accepted definition was made by the All Party Parliamentary Group on British Muslims in 2019: “Islamophobia is rooted in racism and is a type of racism that targets expressions of Muslimness or perceived Muslimness.” It further defines it as “inciting hatred or violence against Muslims”.
Profile of Tarabut Gateway
Founder: Abdulla Almoayed
Based: UAE
Founded: 2017
Number of employees: 35
Sector: FinTech
Raised: $13 million
Backers: Berlin-based venture capital company Target Global, Kingsway, CE Ventures, Entrée Capital, Zamil Investment Group, Global Ventures, Almoayed Technologies and Mad’a Investment.
The specs: Hyundai Ionic Hybrid
Price, base: Dh117,000 (estimate)
Engine: 1.6L four-cylinder, with 1.56kWh battery
Transmission: Six-speed automatic
Power: 105hp (engine), plus 43.5hp (battery)
Torque: 147Nm (engine), plus 170Nm (battery)
Fuel economy, combined: 3.4L / 100km
Defending champions
World Series: South Africa
Women’s World Series: Australia
Gulf Men’s League: Dubai Exiles
Gulf Men’s Social: Mediclinic Barrelhouse Warriors
Gulf Vets: Jebel Ali Dragons Veterans
Gulf Women: Dubai Sports City Eagles
Gulf Under 19: British School Al Khubairat
Gulf Under 19 Girls: Dubai Exiles
UAE National Schools: Al Safa School
International Invitational: Speranza 22
International Vets: Joining Jack
Mercer, the investment consulting arm of US services company Marsh & McLennan, expects its wealth division to at least double its assets under management (AUM) in the Middle East as wealth in the region continues to grow despite economic headwinds, a company official said.
Mercer Wealth, which globally has $160 billion in AUM, plans to boost its AUM in the region to $2-$3bn in the next 2-3 years from the present $1bn, said Yasir AbuShaban, a Dubai-based principal with Mercer Wealth.
“Within the next two to three years, we are looking at reaching $2 to $3 billion as a conservative estimate and we do see an opportunity to do so,” said Mr AbuShaban.
Mercer does not directly make investments, but allocates clients’ money they have discretion to, to professional asset managers. They also provide advice to clients.
“We have buying power. We can negotiate on their (client’s) behalf with asset managers to provide them lower fees than they otherwise would have to get on their own,” he added.
Mercer Wealth’s clients include sovereign wealth funds, family offices, and insurance companies among others.
From its office in Dubai, Mercer also looks after Africa, India and Turkey, where they also see opportunity for growth.
Wealth creation in Middle East and Africa (MEA) grew 8.5 per cent to $8.1 trillion last year from $7.5tn in 2015, higher than last year’s global average of 6 per cent and the second-highest growth in a region after Asia-Pacific which grew 9.9 per cent, according to consultancy Boston Consulting Group (BCG). In the region, where wealth grew just 1.9 per cent in 2015 compared with 2014, a pickup in oil prices has helped in wealth generation.
BCG is forecasting MEA wealth will rise to $12tn by 2021, growing at an annual average of 8 per cent.
Drivers of wealth generation in the region will be split evenly between new wealth creation and growth of performance of existing assets, according to BCG.
Another general trend in the region is clients’ looking for a comprehensive approach to investing, according to Mr AbuShaban.
“Institutional investors or some of the families are seeing a slowdown in the available capital they have to invest and in that sense they are looking at optimizing the way they manage their portfolios and making sure they are not investing haphazardly and different parts of their investment are working together,” said Mr AbuShaban.
Some clients also have a higher appetite for risk, given the low interest-rate environment that does not provide enough yield for some institutional investors. These clients are keen to invest in illiquid assets, such as private equity and infrastructure.
“What we have seen is a desire for higher returns in what has been a low-return environment specifically in various fixed income or bonds,” he said.
“In this environment, we have seen a de facto increase in the risk that clients are taking in things like illiquid investments, private equity investments, infrastructure and private debt, those kind of investments were higher illiquidity results in incrementally higher returns.”
The Abu Dhabi Investment Authority, one of the largest sovereign wealth funds, said in its 2016 report that has gradually increased its exposure in direct private equity and private credit transactions, mainly in Asian markets and especially in China and India. The authority’s private equity department focused on structured equities owing to “their defensive characteristics.”
The Voice of Hind Rajab
Starring: Saja Kilani, Clara Khoury, Motaz Malhees
Director: Kaouther Ben Hania
Rating: 4/5
UAE currency: the story behind the money in your pockets
The specs: 2018 Nissan Altima
Price, base / as tested: Dh78,000 / Dh97,650
Engine: 2.5-litre in-line four-cylinder
Power: 182hp @ 6,000rpm
Torque: 244Nm @ 4,000rpm
Transmission: Continuously variable tranmission
Fuel consumption, combined: 7.6L / 100km
