A father has described his immense gratitude after his baby received a life-saving, Dh8-million drug and a UAE businessman helped to cover medical costs..
Mohammed and Nihal Al Alami’s three-month-old child, Malak, was born with spinal muscular atrophy. It is a disorder that killed the couple's first child, Abdulrahman, in 2018.
The hereditary disease causes the rapid and irreversible loss of motor neurons. This affects muscle function, impairing breathing, swallowing and overall movement.
I am a father of two beautiful daughters myself and I couldn't begin to fathom what her parents must have been going through. I’m very happy to know that, by God's grace, baby Malak will get a second chance in life
Hasan Al Fardan
On Sunday, doctors at Al Jalila Children's Speciality Hospital in Dubai administered Zolgensma, the world’s most expensive drug, after Malak won a global “lottery” run by the Novartis, the medicine's manufacturer.
But almost Dh82,000 to cover hospital and doctors' fees remained outstanding.
Mr Al Alami, who is still paying back debts associated with the treatment of his first child, faced taking on even more finance to pay for it, until UAE businessman Hasan Al Fardan stepped in.
The chief executive of Al Fardan Exchange made the donation after reading about Malak’s plight in The National.
Mr Al Alami said he “felt like mountains in his chest” had been removed after Malak received the treatment, which will help her to live a normal life.
“Now I have peace of mind. Today I ordered food and I could taste it,” he told The National.
“I have been eating just to survive these last few years. Today when I started eating I thought: ‘I am eating. I can taste.’”
He said he did not know how to thank Mr Al Fardan for his support.
“The hospital told me: 'Mohammed, no need to be worried about this, just be with your daughter. No need to think about any financial things because we are in direct contact with Mr Al Fardan',” he said.
Mr Al Fardan said Malak’s story “moved him to the core”.
“I am a father of two beautiful daughters myself and I couldn't begin to fathom what her parents must have been going through,” he said.
“As a father, I couldn’t begin to imagine how difficult it must be to lose a child, let alone live in constant fear of the same happening to your second.”
Mr Al Fardan said his family is blessed to be in a position to help others in need.
In March, he paid the Dh57,000 hospital bill for the care of twins who were born prematurely in Dubai.
“We are thrilled that baby Malak will have an opportunity to grow up with her parents and live a healthy and happy life,” Mr Al Fardan said.
“I grew up in a family where giving back is a responsibility and I will always live by that. I’m very happy to know that, by God's grace, baby Malak will get a second chance in life."
There are four forms of spinal muscular atrophy and both of Mr Al Alami's children were born with type one, the severest form.
Children born with type one typically die before their second birthday if it is not treated.
“I said to the doctor I will help Malak reach the level where she will be a doctor, inshallah, in 20 years," Mr Al Alami said.
“And she will provide help for the public for free."
Learn more about Qasr Al Hosn
In 2013, The National's History Project went beyond the walls to see what life was like living in Abu Dhabi's fabled fort:
Key facilities
- Olympic-size swimming pool with a split bulkhead for multi-use configurations, including water polo and 50m/25m training lanes
- 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
- Disruption Lab and Research Centre for developing entrepreneurial skills
MOUNTAINHEAD REVIEW
Starring: Ramy Youssef, Steve Carell, Jason Schwartzman
Director: Jesse Armstrong
Rating: 3.5/5
BMW M5 specs
Engine: 4.4-litre twin-turbo V-8 petrol enging with additional electric motor
Power: 727hp
Torque: 1,000Nm
Transmission: 8-speed auto
Fuel consumption: 10.6L/100km
On sale: Now
Price: From Dh650,000
COMPANY PROFILE
Name: Kumulus Water
Started: 2021
Founders: Iheb Triki and Mohamed Ali Abid
Based: Tunisia
Sector: Water technology
Number of staff: 22
Investment raised: $4 million
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Specs
Engine: Electric motor generating 54.2kWh (Cooper SE and Aceman SE), 64.6kW (Countryman All4 SE)
Power: 218hp (Cooper and Aceman), 313hp (Countryman)
Torque: 330Nm (Cooper and Aceman), 494Nm (Countryman)
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Price: From Dh158,000 (Cooper), Dh168,000 (Aceman), Dh190,000 (Countryman)
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The National's picks
4.35pm: Tilal Al Khalediah
5.10pm: Continous
5.45pm: Raging Torrent
6.20pm: West Acre
7pm: Flood Zone
7.40pm: Straight No Chaser
8.15pm: Romantic Warrior
8.50pm: Calandogan
9.30pm: Forever Young
GAC GS8 Specs
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The specs
Engine: Four electric motors, one at each wheel
Power: 579hp
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Transmission: Single-speed automatic
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On sale: Now
The bio
Who inspires you?
I am in awe of the remarkable women in the Arab region, both big and small, pushing boundaries and becoming role models for generations. Emily Nasrallah was a writer, journalist, teacher and women’s rights activist
How do you relax?
Yoga relaxes me and helps me relieve tension, especially now when we’re practically chained to laptops and desks. I enjoy learning more about music and the history of famous music bands and genres.
What is favourite book?
The Perks of Being a Wallflower - I think I've read it more than 7 times
What is your favourite Arabic film?
Hala2 Lawen (Translation: Where Do We Go Now?) by Nadine Labaki
What is favourite English film?
Mamma Mia
Best piece of advice to someone looking for a career at Google?
If you’re interested in a career at Google, deep dive into the different career paths and pinpoint the space you want to join. When you know your space, you’re likely to identify the skills you need to develop.
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History's medical milestones
1799 - First small pox vaccine administered
1846 - First public demonstration of anaesthesia in surgery
1861 - Louis Pasteur published his germ theory which proved that bacteria caused diseases
1895 - Discovery of x-rays
1923 - Heart valve surgery performed successfully for first time
1928 - Alexander Fleming discovers penicillin
1953 - Structure of DNA discovered
1952 - First organ transplant - a kidney - takes place
1954 - Clinical trials of birth control pill
1979 - MRI, or magnetic resonance imaging, scanned used to diagnose illness and injury.
1998 - The first adult live-donor liver transplant is carried out
Brief scoreline:
Tottenham 1
Son 78'
Manchester City 0
Results
1.30pm Handicap (PA) Dh50,000 (Dirt) 1,400m
Winner Al Suhooj, Saif Al Balushi (jockey), Khalifa Al Neyadi (trainer)
2pm Handicap (TB) 68,000 (D) 1,950m
Winner Miracle Maker, Xavier Ziani, Salem bin Ghadayer
2.30pm Maiden (TB) Dh60,000 (D) 1,600m
Winner Mazagran, Tadhg O’Shea, Satish Seemar
3pm Handicap (TB) Dh84,000 (D) 1,800m
Winner Tailor’s Row, Royston Ffrench, Salem bin Ghadayer
3.30pm Handicap (TB) Dh76,000 (D) 1,400m
Winner Alla Mahlak, Adrie de Vries, Rashed Bouresly
4pm Maiden (TB) Dh60,000 (D) 1,200m
Winner Hurry Up, Royston Ffrench, Salem bin Ghadayer
4.30pm Handicap (TB) Dh68,000 (D) 1,200m
Key findings
- Over a period of seven years, a team of scientists analysed dietary data from 50,000 North American adults.
- Eating one or two meals a day was associated with a relative decrease in BMI, compared with three meals. Snacks count as a meal. Likewise, participants who ate more than three meals a day experienced an increase in BMI: the more meals a day, the greater the increase.
- People who ate breakfast experienced a relative decrease in their BMI compared with “breakfast-skippers”.
- Those who turned the eating day on its head to make breakfast the biggest meal of the day, did even better.
- But scrapping dinner altogether gave the best results. The study found that the BMI of subjects who had a long overnight fast (of 18 hours or more) decreased when compared even with those who had a medium overnight fast, of between 12 and 17 hours.
Drishyam 2
Directed by: Jeethu Joseph
Starring: Mohanlal, Meena, Ansiba, Murali Gopy
Rating: 4 stars
Indoor cricket in a nutshell
Indoor Cricket World Cup – Sep 16-20, Insportz, Dubai
16 Indoor cricket matches are 16 overs per side
8 There are eight players per team
9 There have been nine Indoor Cricket World Cups for men. Australia have won every one.
5 Five runs are deducted from the score when a wickets falls
4 Batsmen bat in pairs, facing four overs per partnership
Scoring In indoor cricket, runs are scored by way of both physical and bonus runs. Physical runs are scored by both batsmen completing a run from one crease to the other. Bonus runs are scored when the ball hits a net in different zones, but only when at least one physical run is score.
Zones
A Front net, behind the striker and wicketkeeper: 0 runs
B Side nets, between the striker and halfway down the pitch: 1 run
C Side nets between halfway and the bowlers end: 2 runs
D Back net: 4 runs on the bounce, 6 runs on the full
WISH
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COMPANY PROFILE
Name: HyperSpace
Started: 2020
Founders: Alexander Heller, Rama Allen and Desi Gonzalez
Based: Dubai, UAE
Sector: Entertainment
Number of staff: 210
Investment raised: $75 million from investors including Galaxy Interactive, Riyadh Season, Sega Ventures and Apis Venture Partners
Other must-tries
Tomato and walnut salad
A lesson in simple, seasonal eating. Wedges of tomato, chunks of cucumber, thinly sliced red onion, coriander or parsley leaves, and perhaps some fresh dill are drizzled with a crushed walnut and garlic dressing. Do consider yourself warned: if you eat this salad in Georgia during the summer months, the tomatoes will be so ripe and flavourful that every tomato you eat from that day forth will taste lacklustre in comparison.
Badrijani nigvzit
A delicious vegetarian snack or starter. It consists of thinly sliced, fried then cooled aubergine smothered with a thick and creamy walnut sauce and folded or rolled. Take note, even though it seems like you should be able to pick these morsels up with your hands, they’re not as durable as they look. A knife and fork is the way to go.
Pkhali
This healthy little dish (a nice antidote to the khachapuri) is usually made with steamed then chopped cabbage, spinach, beetroot or green beans, combined with walnuts, garlic and herbs to make a vegetable pâté or paste. The mix is then often formed into rounds, chilled in the fridge and topped with pomegranate seeds before being served.
WHAT IS A BLACK HOLE?
1. Black holes are objects whose gravity is so strong not even light can escape their pull
2. They can be created when massive stars collapse under their own weight
3. Large black holes can also be formed when smaller ones collide and merge
4. The biggest black holes lurk at the centre of many galaxies, including our own
5. Astronomers believe that when the universe was very young, black holes affected how galaxies formed
ONCE UPON A TIME IN GAZA
Starring: Nader Abd Alhay, Majd Eid, Ramzi Maqdisi
Directors: Tarzan and Arab Nasser
Rating: 4.5/5
