ABU DHABI // With laboured breathing, slurred speech and a barely audible voice, Sara says from her wheelchair that she dreads the day the lights go out.
“I don’t want to go blind like my brother and die such a death,” says Egyptian, 18. “I want the last thing I see before I die to be my mother. Not darkness.”
Sara slightly tilts her head towards her 12-year-old sister Shahed, who twirls around her.
Shahed is unable to keep her balance.
“I pray she doesn’t end up in a wheelchair like me,” says Sara.
She is in the latter stages of the disease and has lost the use of her legs and arms. Her heart and lungs are failing. She has had spinal surgery to insert metal rods that straighten her back.
Shahed’s balance is so poor she often falls over. Eventually, she, too, will be in a wheelchair like her older sibling.
“I love to run. I can’t be in a wheelchair,” she says. “It’s hard. Won’t they find a cure?”
Shahed is in Grade 7 at the Islamia English school in Abu Dhabi. Her classmates tease her because she “walks funny”.
“They tell me that they don’t have to be nice to me because I’m sick. They make fun of me and are angry at me because my teachers are so nice to me. They don’t think its fair that I’m treated special and will use me if they want something from the teacher,” she says. “I want to grow up to be a doctor so I can find a cure for this disease.”
Sara attends Arabic and Islamic studies at Al Hosn University. She received a scholarship after graduating first in the Abu Dhabi Educational Zone in the special needs category. It was awarded by Sheikh Mansour bin Zayed, Deputy Prime Minister and Minister for Presidential Affairs.
“I told Sheikh Mansour that I had a favour to ask and I wanted to continue my education but then I couldn’t breathe.”
Her visit was finished before she could continue. “I wanted to ask him to help my sister, to help my mother.
“I’m lucky I got to meet him, and being in the UAE is already a blessing,” says Sara. “But I wish I could have told him to take care of my family for me – my sisters, to see that we are buried here. We were born here and our dream is to die here.
“My parents are old and sick and alone. They have to carry me, bathe me and do everything for me. I wish there was something I could do for them.”
salnuwais@thenational.ae
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The struggle is on for active managers
David Einhorn closed out 2018 with his biggest annual loss ever for the 22-year-old Greenlight Capital.
The firm’s main hedge fund fell 9 per cent in December, extending this year’s decline to 34 percent, according to an investor update viewed by Bloomberg.
Greenlight posted some of the industry’s best returns in its early years, but has stumbled since losing more than 20 per cent in 2015.
Other value-investing managers have also struggled, as a decade of historically low interest rates and the rise of passive investing and quant trading pushed growth stocks past their inexpensive brethren. Three Bays Capital and SPO Partners & Co., which sought to make wagers on undervalued stocks, closed in 2018. Mr Einhorn has repeatedly expressed his frustration with the poor performance this year, while remaining steadfast in his commitment to value investing.
Greenlight, which posted gains only in May and October, underperformed both the broader market and its peers in 2018. The S&P 500 Index dropped 4.4 per cent, including dividends, while the HFRX Global Hedge Fund Index, an early indicator of industry performance, fell 7 per cent through December. 28.
At the start of the year, Greenlight managed $6.3 billion in assets, according to a regulatory filing. By May, the firm was down to $5.5bn.
If you go
Where to stay: Courtyard by Marriott Titusville Kennedy Space Centre has unparalleled views of the Indian River. Alligators can be spotted from hotel room balconies, as can several rocket launch sites. The hotel also boasts cool space-themed decor.
When to go: Florida is best experienced during the winter months, from November to May, before the humidity kicks in.
How to get there: Emirates currently flies from Dubai to Orlando five times a week.
Paatal Lok season two
Directors: Avinash Arun, Prosit Roy
Stars: Jaideep Ahlawat, Ishwak Singh, Lc Sekhose, Merenla Imsong
Rating: 4.5/5
Formula Middle East Calendar (Formula Regional and Formula 4)
Round 1: January 17-19, Yas Marina Circuit – Abu Dhabi
Round 2: January 22-23, Yas Marina Circuit – Abu Dhabi
Round 3: February 7-9, Dubai Autodrome – Dubai
Round 4: February 14-16, Yas Marina Circuit – Abu Dhabi
Round 5: February 25-27, Jeddah Corniche Circuit – Saudi Arabia
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