The family of an Egyptian toddler diagnosed with spinal muscular atrophy are celebrating the success of a campaign that raised 40 million pounds ($2.13 million) in less than a week to pay for a single-dose treatment to save her life.
Roqaya’s family were told by doctors that their daughter needed to receive a dose of Zolgensma, the world’s most expensive prescription drug, developed by pharmaceutical giant Novartis, before her second birthday on July 13.
Roqaya began to show symptoms of SMA when she was 6 months old, when she began to find it difficult to move or crawl.
The disease is caused by the absence or mutation of a gene called SMN1, which weakens the muscles of those suffering from it to varying degrees and at different speeds, according to the type of SMA they have.
Roqaya was diagnosed with the most severe of four types of spinal muscular atrophy that accounts for about 60 per cent of cases. Patients with this type develop symptoms within the first six months of life and typically die before their second birthday.
Her parents said it took doctors a long time to properly diagnose their daughter’s illness. They were told earlier this year that she would need to receive a dose of Zolgensma, which received FDA approval in 2019 and needs to be administered before a child’s second birthday to have optimal results.
Upon learning the high cost of the drug, Roqaya’s family and their friends and neighbours began to share her story on social media and appeal for donations.
Her story has been one of the most followed on Egyptian social media channels in recent weeks, with many celebrities, businessmen and athletes asking their fans to donate.
Thousands of people answered the call, with 10 million pounds raised in the first three days of the campaign and 40 million in just one week.
A group of students from Cairo University cancelled their graduation party and donated the funds to Roqaya’s cause, local media reported.
The fund was managed by the Social Solidarity Ministry, which also opened a dedicated donations channel that allowed people to contribute when paying for their purchases at supermarkets and other stores.
Roqaya's family held a celebration in their home town of Alexandria on Friday as the donations reached 40 million pounds.
Her parents thanked all those who donated and helped raise awareness of Roqaya's plight, including the actors Mohamed Heneidy and Ahmed El Awady.
The specs
Engine: 5.0-litre supercharged V8
Transmission: Eight-speed auto
Power: 575bhp
Torque: 700Nm
Price: Dh554,000
On sale: now
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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
Essentials
The flights
Emirates and Etihad fly direct from the UAE to Geneva from Dh2,845 return, including taxes. The flight takes 6 hours.
The package
Clinique La Prairie offers a variety of programmes. A six-night Master Detox costs from 14,900 Swiss francs (Dh57,655), including all food, accommodation and a set schedule of medical consultations and spa treatments.
Neil Thomson – THE BIO
Family: I am happily married to my wife Liz and we have two children together.
Favourite music: Rock music. I started at a young age due to my father’s influence. He played in an Indian rock band The Flintstones who were once asked by Apple Records to fly over to England to perform there.
Favourite book: I constantly find myself reading The Bible.
Favourite film: The Greatest Showman.
Favourite holiday destination: I love visiting Melbourne as I have family there and it’s a wonderful place. New York at Christmas is also magical.
Favourite food: I went to boarding school so I like any cuisine really.
The candidates
Dr Ayham Ammora, scientist and business executive
Ali Azeem, business leader
Tony Booth, professor of education
Lord Browne, former BP chief executive
Dr Mohamed El-Erian, economist
Professor Wyn Evans, astrophysicist
Dr Mark Mann, scientist
Gina MIller, anti-Brexit campaigner
Lord Smith, former Cabinet minister
Sandi Toksvig, broadcaster
Labour dispute
The insured employee may still file an ILOE claim even if a labour dispute is ongoing post termination, but the insurer may suspend or reject payment, until the courts resolve the dispute, especially if the reason for termination is contested. The outcome of the labour court proceedings can directly affect eligibility.
- Abdullah Ishnaneh, Partner, BSA Law
More from Neighbourhood Watch:
APPLE IPAD MINI (A17 PRO)
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Biometrics: Touch ID, Face ID
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How does ToTok work?
The calling app is available to download on Google Play and Apple App Store
To successfully install ToTok, users are asked to enter their phone number and then create a nickname.
The app then gives users the option add their existing phone contacts, allowing them to immediately contact people also using the application by video or voice call or via message.
Users can also invite other contacts to download ToTok to allow them to make contact through the app.
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Six large-scale objects on show
- Concrete wall and windows from the now demolished Robin Hood Gardens housing estate in Poplar
- The 17th Century Agra Colonnade, from the bathhouse of the fort of Agra in India
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- Frank Lloyd Wright’s 1930s Kaufmann Office
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The British in India: Three Centuries of Ambition and Experience
by David Gilmour
Allen Lane
UAE currency: the story behind the money in your pockets
The specs
Engine: 2.0-litre 4-cylturbo
Transmission: seven-speed DSG automatic
Power: 242bhp
Torque: 370Nm
Price: Dh136,814
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
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NO OTHER LAND
Director: Basel Adra, Yuval Abraham, Rachel Szor, Hamdan Ballal
Stars: Basel Adra, Yuval Abraham
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Killing of Qassem Suleimani
Credits
Produced by: Colour Yellow Productions and Eros Now
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Company%20profile
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Conflict, drought, famine
Estimates of the number of deaths caused by the famine range from 400,000 to 1 million, according to a document prepared for the UK House of Lords in 2024.
It has been claimed that the policies of the Ethiopian government, which took control after deposing Emperor Haile Selassie in a military-led revolution in 1974, contributed to the scale of the famine.
Dr Miriam Bradley, senior lecturer in humanitarian studies at the University of Manchester, has argued that, by the early 1980s, “several government policies combined to cause, rather than prevent, a famine which lasted from 1983 to 1985. Mengistu’s government imposed Stalinist-model agricultural policies involving forced collectivisation and villagisation [relocation of communities into planned villages].
The West became aware of the catastrophe through a series of BBC News reports by journalist Michael Buerk in October 1984 describing a “biblical famine” and containing graphic images of thousands of people, including children, facing starvation.
Band Aid
Bob Geldof, singer with the Irish rock group The Boomtown Rats, formed Band Aid in response to the horrific images shown in the news broadcasts.
With Midge Ure of the band Ultravox, he wrote the hit charity single Do They Know it’s Christmas in December 1984, featuring a string of high-profile musicians.
Following the single’s success, the idea to stage a rock concert evolved.
Live Aid was a series of simultaneous concerts that took place at Wembley Stadium in London, John F Kennedy Stadium in Philadelphia, the US, and at various other venues across the world.
The combined event was broadcast to an estimated worldwide audience of 1.5 billion.
