A baby in need of an Dh8 million lifesaving drug will receive it after winning a global “lottery” run by the medicine's manufacturer.
Three-month-old Malak Al Alami has spinal muscular atrophy, which killed her elder brother, Abdulrahman, in 2018.
The hereditary disorder causes rapid and irreversible loss of motor neurons that affect muscle functions such as breathing, swallowing and overall movement.
Had she not been selected to receive Zolgensma, the world’s most expensive drug, she could have faced dying before she was two, like her brother did.
The National reported on her case last week, when her father, Mohammed Al Alami, a lifelong UAE resident, spoke of the anguish the couple faced at potentially losing their second and only living child to the condition.
He has since been informed Malak was selected to receive the drug free of charge in a global programme by Novartis, which is allocating up to 100 doses at no charge this year.
Novartis appoints a third party to select recipients every two weeks. The family entered Malak into the programme in April.
The treatment will completely cure her, enabling her to live a normal life.
“The doctor said if she takes it before she is six months old, no one would ever have known she was sick. She will be totally fit,” Mr Al Alami said.
“We found out at a very early stage. She can still move her arms.”
Mr Al Alami, who lives in Sharjah, received the news in the car on the way to the office and struggled to process it.
“My tears started coming,” he said. “I said: doctor are you joking? He said: 'No, we cannot joke about such topics.' And yes, she will get it and she will be better. She will grow up in front of you.
"He said now 99 per cent of the amount has been covered, so we are looking for just 1 per cent of the amount to pay for the admission and the doctor’s amount. I took a U-turn and I went home to tell my wife.
"She started crying and thanking God."
Mr Al Alami said he had never won any sort of competition before and did not consider himself lucky. The couple were told there was little to no hope of being successful through the programme.
"Sometimes whenever I'm going to the shopping mall, using Al Ansari or anywhere, they say ‘okay just submit this one and you will win.’ I never win,” said Mr Al Alami, an accounts administrator who is still repaying debt associated with the treatment for the couple’s son.
“But this is the biggest lesson in my life. Whenever the chance is there, even if it is like 0.001 per cent, you have to catch it. You should not give up. You don’t know which door will open for you.”
Malak will receive the drug, which is delivered by infusion, next week.
There are four forms of the condition and both of Mr Al Alami's children were born with type one, the severest type. Most children born with type one die before their second birthday.
An updated invoice the family has received from Al Jalila Children's Speciality Hospital, where their daughter is being treated, now shows the removal of the Dh8m cost, leaving only the hospital and doctor's fees. It still leaves Mr Alami with a sizeable chunk to pay but it is possible to fund through financing.
“I can see Dh8m has been removed and I am dealing with Dh81,000 or Dh80,000," said Mr Al Alami.
“It can be managed at least.”
Follow baby Malak's updates on the Instagram account managed by her parents.
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
The specs
Engine: Turbocharged four-cylinder 2.7-litre
Power: 325hp
Torque: 500Nm
Transmission: 10-speed automatic
Price: From Dh189,700
On sale: now
The specs
AT4 Ultimate, as tested
Engine: 6.2-litre V8
Power: 420hp
Torque: 623Nm
Transmission: 10-speed automatic
Price: From Dh330,800 (Elevation: Dh236,400; AT4: Dh286,800; Denali: Dh345,800)
On sale: Now
The biog
Name: Sarah Al Senaani
Age: 35
Martial status: Married with three children - aged 8, 6 and 2
Education: Masters of arts in cultural communication and tourism
Favourite movie: Captain Corelli’s Mandolin
Favourite hobbies: Art and horseback ridding
Occupation: Communication specialist at a government agency and the owner of Atelier
Favourite cuisine: Definitely Emirati - harees is my favourite dish
COMPANY%20PROFILE
German plea
SPECS
Ruwais timeline
1971 Abu Dhabi National Oil Company established
1980 Ruwais Housing Complex built, located 10 kilometres away from industrial plants
1982 120,000 bpd capacity Ruwais refinery complex officially inaugurated by the founder of the UAE Sheikh Zayed
1984 Second phase of Ruwais Housing Complex built. Today the 7,000-unit complex houses some 24,000 people.
1985 The refinery is expanded with the commissioning of a 27,000 b/d hydro cracker complex
2009 Plans announced to build $1.2 billion fertilizer plant in Ruwais, producing urea
2010 Adnoc awards $10bn contracts for expansion of Ruwais refinery, to double capacity from 415,000 bpd
2014 Ruwais 261-outlet shopping mall opens
2014 Production starts at newly expanded Ruwais refinery, providing jet fuel and diesel and allowing the UAE to be self-sufficient for petrol supplies
2014 Etihad Rail begins transportation of sulphur from Shah and Habshan to Ruwais for export
2017 Aldar Academies to operate Adnoc’s schools including in Ruwais from September. Eight schools operate in total within the housing complex.
2018 Adnoc announces plans to invest $3.1 billion on upgrading its Ruwais refinery
2018 NMC Healthcare selected to manage operations of Ruwais Hospital
2018 Adnoc announces new downstream strategy at event in Abu Dhabi on May 13
Source: The National
Ferrari 12Cilindri specs
Engine: naturally aspirated 6.5-liter V12
Power: 819hp
Torque: 678Nm at 7,250rpm
Price: From Dh1,700,000
Available: Now
Specs
Engine: Duel electric motors
Power: 659hp
Torque: 1075Nm
On sale: Available for pre-order now
Price: On request
On Women's Day
Shelina Janmohamed: Why shouldn't a spouse be compensated fairly for housework?
Samar Elmnhrawy: How companies in the Middle East can catch up on gender equality
The National Editorial: Is there much to celebrate on International Women's Day 2021?
Justin Thomas: Challenge the notion that 'men are from Mars, women are from Venus'
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
Hotel Data Cloud profile
Date started: June 2016
Founders: Gregor Amon and Kevin Czok
Based: Dubai
Sector: Travel Tech
Size: 10 employees
Funding: $350,000 (Dh1.3 million)
Investors: five angel investors (undisclosed except for Amar Shubar)
On Women's Day
Dr Nawal Al-Hosany: Why more women should be on the frontlines of climate action
Samar Elmnhrawy: How companies in the Middle East can catch up on gender equality
The National Editorial: Is there much to celebrate on International Women's Day 2021?
Justin Thomas: Challenge the notion that 'men are from Mars, women are from Venus'
Lexus LX700h specs
Engine: 3.4-litre twin-turbo V6 plus supplementary electric motor
Power: 464hp at 5,200rpm
Torque: 790Nm from 2,000-3,600rpm
Transmission: 10-speed auto
Fuel consumption: 11.7L/100km
On sale: Now
Price: From Dh590,000
EPL's youngest
- Ethan Nwaneri (Arsenal)
15 years, 181 days old - Max Dowman (Arsenal)
15 years, 235 days old - Jeremy Monga (Leicester)
15 years, 271 days old - Harvey Elliott (Fulham)
16 years, 30 days old - Matthew Briggs (Fulham)
16 years, 68 days old
SPECS
On Women's Day
Dr Nawal Al-Hosany: Why more women should be on the frontlines of climate action
Shelina Janmohamed: Why shouldn't a spouse be compensated fairly for housework?
Justin Thomas: Challenge the notion that 'men are from Mars, women are from Venus'
The National Editorial: Is there much to celebrate on International Women's Day 2021?
Whiile you're here
Damien McElroy: Anti-science attitudes in America are proving lethal
Editorial: What makes the UAE such a good place to test vaccines?
Editorial: The fight against Covid-19 should be guided by science
Killing of Qassem Suleimani
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Our commentary on Brexit
- Con Coughlin: Choice of the British people will be vindicated
- Sam Williams: Departure is influenced by its sense of place
KILLING OF QASSEM SULEIMANI
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Rashmee Roshan Lall: Sound of silence in South Asia
Richard Olson: Why Afghanistan will be very wary
Company%20profile
A Cat, A Man, and Two Women
Junichiro Tamizaki
Translated by Paul McCarthy
Daunt Books
Zakat definitions
Zakat: an Arabic word meaning ‘to cleanse’ or ‘purification’.
Nisab: the minimum amount that a Muslim must have before being obliged to pay zakat. Traditionally, the nisab threshold was 87.48 grams of gold, or 612.36 grams of silver. The monetary value of the nisab therefore varies by current prices and currencies.
Zakat Al Mal: the ‘cleansing’ of wealth, as one of the five pillars of Islam; a spiritual duty for all Muslims meeting the ‘nisab’ wealth criteria in a lunar year, to pay 2.5 per cent of their wealth in alms to the deserving and needy.
Zakat Al Fitr: a donation to charity given during Ramadan, before Eid Al Fitr, in the form of food. Every adult Muslim who possesses food in excess of the needs of themselves and their family must pay two qadahs (an old measure just over 2 kilograms) of flour, wheat, barley or rice from each person in a household, as a minimum.
Global Fungi Facts
• Scientists estimate there could be as many as 3 million fungal species globally
• Only about 160,000 have been officially described leaving around 90% undiscovered
• Fungi account for roughly 90% of Earth's unknown biodiversity
• Forest fungi help tackle climate change, absorbing up to 36% of global fossil fuel emissions annually and storing around 5 billion tonnes of carbon in the planet's topsoil
Fixtures (all times UAE)
Saturday
Brescia v Atalanta (6pm)
Genoa v Torino (9pm)
Fiorentina v Lecce (11.45pm)
Sunday
Juventus v Sassuolo (3.30pm)
Inter Milan v SPAL (6pm)
Lazio v Udinese (6pm)
Parma v AC Milan (6pm)
Napoli v Bologna (9pm)
Verona v AS Roma (11.45pm)
Monday
Cagliari v Sampdoria (11.45pm)
While you're here
National Editorial: Donald Trump has left his mark on the Middle East
Con Coughlin: The thorn in the side of Biden's foreign policy team
James Reinl: Biden’s Yemen U-turn gets thumbs-up overseas
Raghida Dergham: Will Biden's 'maximum diplomacy' with Iran work?
The%20stats%20and%20facts
Sweet%20Tooth
Red flags
- Promises of high, fixed or 'guaranteed' returns.
- Unregulated structured products or complex investments often used to bypass traditional safeguards.
- Lack of clear information, vague language, no access to audited financials.
- Overseas companies targeting investors in other jurisdictions - this can make legal recovery difficult.
- Hard-selling tactics - creating urgency, offering 'exclusive' deals.
Courtesy: Carol Glynn, founder of Conscious Finance Coaching
RESULTS
5pm Maiden (PA) Dh70,000 (Dirt) 1,400m
Winner AF Nashrah, Tadhg O’Shea (jockey), Ernst Oertel (trainer)
5.30pm Maiden (PA) Dh70,000 (D) 1,400m
Winner Mutaqadim, Riccardo Iacopini, Ibrahim Al Hadhrami.
6pm Maiden (PA) Dh70,000 (D) 1,600m
Winner Hameem, Jose Santiago, Abdallah Al Hammadi.
6.30pm Maiden (PA) Dh70,000 (D) 1,600m
Winner AF Almomayaz, Sandro Paiva, Ali Rashid Al Raihe.
7pm Handicap (PA) Dh70,000 (D) 1,800m
Winner Dalil Al Carrere, Fernando Jara, Mohamed Daggash.
7.30pm Handicap (TB) Dh70,000 (D) 1,000m
Winner Lahmoom, Royston Ffrench, Salem bin Ghadayer.
8pm Handicap (PA) Dh70,000 (D) 1,000m
Winner Jayide Al Boraq, Bernardo Pinheiro, Khalifa Al Neyadi.
MATCH INFO
Uefa Champions League semi-final, first leg
Barcelona v Liverpool, Wednesday, 11pm (UAE).
Second leg
Liverpool v Barcelona, Tuesday, May 7, 11pm
Games on BeIN Sports
It's up to you to go green
Nils El Accad, chief executive and owner of Organic Foods and Café, says going green is about “lifestyle and attitude” rather than a “money change”; people need to plan ahead to fill water bottles in advance and take their own bags to the supermarket, he says.
“People always want someone else to do the work; it doesn’t work like that,” he adds. “The first step: you have to consciously make that decision and change.”
When he gets a takeaway, says Mr El Accad, he takes his own glass jars instead of accepting disposable aluminium containers, paper napkins and plastic tubs, cutlery and bags from restaurants.
He also plants his own crops and herbs at home and at the Sheikh Zayed store, from basil and rosemary to beans, squashes and papayas. “If you’re going to water anything, better it be tomatoes and cucumbers, something edible, than grass,” he says.
“All this throwaway plastic - cups, bottles, forks - has to go first,” says Mr El Accad, who has banned all disposable straws, whether plastic or even paper, from the café chain.
One of the latest changes he has implemented at his stores is to offer refills of liquid laundry detergent, to save plastic. The two brands Organic Foods stocks, Organic Larder and Sonnett, are both “triple-certified - you could eat the product”.
The Organic Larder detergent will soon be delivered in 200-litre metal oil drums before being decanted into 20-litre containers in-store.
Customers can refill their bottles at least 30 times before they start to degrade, he says. Organic Larder costs Dh35.75 for one litre and Dh62 for 2.75 litres and refills will cost 15 to 20 per cent less, Mr El Accad says.
But while there are savings to be had, going green tends to come with upfront costs and extra work and planning. Are we ready to refill bottles rather than throw them away? “You have to change,” says Mr El Accad. “I can only make it available.”
The fake news generation
288,000 – the number of posts reported as hate speech that were deleted by Facebook globally each month in May and June this year
11% – the number of Americans who said they trusted the news they read on Snapchat as of June 2017, according to Statista. Over a quarter stated that they ‘rarely trusted’ the news they read on social media in general
31% - the number of young people in the US aged between 10 and 18 who said they had shared a news story online in the last six months that they later found out was wrong or inaccurate
63% - percentage of Arab nationals who said they get their news from social media every single day.
Comment on Coronavirus
On Women's Day
Dr Nawal Al-Hosany: Why more women should be on the frontlines of climate action
Shelina Janmohamed: Why shouldn't a spouse be compensated fairly for housework?
Samar Elmnhrawy: How companies in the Middle East can catch up on gender equality
The National Editorial: Is there much to celebrate on International Women's Day 2021?
DC%20League%20of%20Super-Pets
E-cigarettes report
While you're here
Aya Iskandarani: Why Hezbollah’s man in Iraq is now worth $10 million to the US
Khaled Yacoub Oweis: Hezbollah bids to control Lebanon’s financial system
National Editorial: Hezbollah's murky dealings in Iraq have been unveiled
Saudi National Day
The national orchestra
More from this package
• Remittance charges will be tackled by blockchain
• UAE's monumental and risky Mars Mission to inspire future generations, says minister
• Could the UAE drive India's economy?
• News has a bright future and the UAE is at the heart of it
• Architecture is over - here's cybertecture
• The National announces Future of News journalism competition
• Round up: Experts share their visions of the world to come
Expert advice
“Join in with a group like Cycle Safe Dubai or TrainYAS, where you’ll meet like-minded people and always have support on hand.”
Stewart Howison, co-founder of Cycle Safe Dubai and owner of Revolution Cycles
“When you sweat a lot, you lose a lot of salt and other electrolytes from your body. If your electrolytes drop enough, you will be at risk of cramping. To prevent salt deficiency, simply add an electrolyte mix to your water.”
Cornelia Gloor, head of RAK Hospital’s Rehabilitation and Physiotherapy Centre
“Don’t make the mistake of thinking you can ride as fast or as far during the summer as you do in cooler weather. The heat will make you expend more energy to maintain a speed that might normally be comfortable, so pace yourself when riding during the hotter parts of the day.”
Chandrashekar Nandi, physiotherapist at Burjeel Hospital in Dubai
57%20Seconds
1,000 Books to Read Before You Die: A Life-Changing List
James Mustich, Workman
The specs
KILLING OF QASSEM SULEIMANI
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
If you go
The flights
There are direct flights from Dubai to Sofia with FlyDubai (www.flydubai.com) and Wizz Air (www.wizzair.com), from Dh1,164 and Dh822 return including taxes, respectively.
The trip
Plovdiv is 150km from Sofia, with an hourly bus service taking around 2 hours and costing $16 (Dh58). The Rhodopes can be reached from Sofia in between 2-4hours.
The trip was organised by Bulguides (www.bulguides.com), which organises guided trips throughout Bulgaria. Guiding, accommodation, food and transfers from Plovdiv to the mountains and back costs around 170 USD for a four-day, three-night trip.
ABU DHABI ORDER OF PLAY
Starting at 10am:
Daria Kasatkina v Qiang Wang
Veronika Kudermetova v Annet Kontaveit (10)
Maria Sakkari (9) v Anastasia Potapova
Anastasia Pavlyuchenkova v Ons Jabeur (15)
Donna Vekic (16) v Bernarda Pera
Ekaterina Alexandrova v Zarina Diyas
