An Emirati father's determination to find out what was causing his son's constant illness has led to the discovery of a rare genetic syndrome in the Middle East.
Majid Salim Muhammad Saif Al Shamili, from Ras Al Khaimah, said Salem was repeatedly taken to hospital with infections, often choking and experiencing "very slow growth". Other symptoms included delays in neurodevelopment, and abnormalities in the shape of his head and face.
It was only after Salem, five, was seen at the Al Jalila Children’s Hospital in Dubai that an endocrinology specialist, Dr Nandu Thalange, suspected a genetic change may have been responsible and he instructed a detailed analysis be carried out.
Along with his colleagues, Dr Ahmad Abou Tayoun, director of the Dubai Health Genomic Medicine Centre and an associate professor of genetics at Mohammed Bin Rashid University, found the child had a condition caused by a single gene mutation.
Tough for parents
When Salem was first taken to hospital in 2020, it kick-started a major research project that led to the identification of more than a dozen children from the UAE, and elsewhere in the region, who were also found to have the disease.
“My reaction at the beginning when he was diagnosed was very difficult for us as his parents, and also my son was the first case of this disease [in the region], so this is what worried us,” said Mr Al Shamili.
After a study, which took five years to complete, researchers have released their findings to identify and characterise the condition, which has so far been seen only in Arab children but which may also affect people from other parts of the world.
"Although we saw the first patient back in 2020, we really didn't confirm the diagnosis until the conclusion of the study and [after] evaluating all of the data," said Dr Tayoun, co-author of the paper published in the American Journal of Human Genetics.
Salem had inherited a mutation from each parent, which made him unable to produce a vital protein in his cells, leading to changes that caused his symptoms.
"We realised this was the most likely cause of disease and submitted our findings to an online tool where investigators worldwide submit novel genes they identified in undiagnosed patients,” Dr Tayoun said.
Based on the symptoms and the gene, the tool matched the Dubai researchers with a geneticist in Saudi Arabia, Dr Bruno Reversade, and researchers in Germany who had analysed DNA samples from Middle Eastern patients.
With the study under way, another patient at Al Jalila Children’s Hospital was found to have the same genetic variant, known as FBX022. "Other similarly affected patients were also identified in the GCC and Lebanon,” said Dr Tayoun – a total 16 patients who had similar symptoms and shared mutations in the gene were identified.
Vital procedures
Much of the genetic work was undertaken at the Dubai Health Genomic Medicine Centre, which was previously known as the Genomic Centre of Excellence at Al Jalila Children's Specialty Hospital.
“Doing genomics work locally is crucial for research activities and discoveries like this one,” Dr Tayoun said.
He said the work also showed Dubai Health’s commitment to “advancing medical discovery” by involving clinicians, clinical scientists and researchers.
“This work also highlights the importance of regional and international collaborations, given the rarity of monogenic diseases [caused by a mutation to a single gene] and the need to connect similarly affected patients to establish causality,” he said.
The analysis indicates that the most common variant of FBX022 identified probably originated in the Middle East, so it is more common in the region than elsewhere. The research identified seven affected Emirati families, all having the most common variant, as did all four families from Oman. Families from Saudi Arabia and Lebanon had different variants.
“All patients so far identified are Arabs but we are sure, now the gene has been discovered, that patients from other populations will be identified, though with different variants,” Dr Tayoun said.
It is possible children may have had the condition in the past but the cause of their symptoms went unrecognised, he added.
Too new to treat
Being a newly identified syndrome, there is not yet any treatment for the condition. The most effective approach, should it be possible, would be a form of therapy in which the deficient form of the gene is replaced with a normal copy. Dr Tayoun said this replacement would need to be done in time to avoid “irreversible, permanent changes during development”.
The Middle East tended to be under-represented in global genomic studies, Dr Tayoun said, resulting in “missed opportunities” to identify novel genetic conditions specific to the region.
While a cure is not possible, Salem, who turns six next month, is showing “very good” development compared to his first three years, his father said, and medication is controlling symptoms such as spasms. His cognition has improved and is continuing to develop thanks to the treatment.
“Now he is undergoing physical and occupational therapy and, thank God, he has started to develop and acquire skills, such as standing and walking a little,” said Mr Al Shamili.
David Haye record
Total fights: 32
Wins: 28
Wins by KO: 26
Losses: 4
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
Abdul Jabar Qahraman was meeting supporters in his campaign office in the southern Afghan province of Helmand when a bomb hidden under a sofa exploded on Wednesday.
The blast in the provincial capital Lashkar Gah killed the Afghan election candidate and at least another three people, Interior Minister Wais Ahmad Barmak told reporters. Another three were wounded, while three suspects were detained, he said.
The Taliban – which controls much of Helmand and has vowed to disrupt the October 20 parliamentary elections – claimed responsibility for the attack.
Mr Qahraman was at least the 10th candidate killed so far during the campaign season, and the second from Lashkar Gah this month. Another candidate, Saleh Mohammad Asikzai, was among eight people killed in a suicide attack last week. Most of the slain candidates were murdered in targeted assassinations, including Avtar Singh Khalsa, the first Afghan Sikh to run for the lower house of the parliament.
The same week the Taliban warned candidates to withdraw from the elections. On Wednesday the group issued fresh warnings, calling on educational workers to stop schools from being used as polling centres.
Specs
Engine: Dual-motor all-wheel-drive electric
Range: Up to 610km
Power: 905hp
Torque: 985Nm
Price: From Dh439,000
Available: Now
England's lowest Test innings
- 45 v Australia in Sydney, January 28, 1887
- 46 v West Indies in Port of Spain, March 25, 1994
- 51 v West Indies in Kingston, February 4, 2009
- 52 v Australia at The Oval, August 14, 1948
- 53 v Australia at Lord's, July 16, 1888
- 58 v New Zealand in Auckland, March 22, 2018
End of free parking
- paid-for parking will be rolled across Abu Dhabi island on August 18
- drivers will have three working weeks leeway before fines are issued
- areas that are currently free to park - around Sheikh Zayed Bridge, Maqta Bridge, Mussaffah Bridge and the Corniche - will now require a ticket
- villa residents will need a permit to park outside their home. One vehicle is Dh800 and a second is Dh1,200.
- The penalty for failing to pay for a ticket after 10 minutes will be Dh200
- Parking on a patch of sand will incur a fine of Dh300
Who are the Sacklers?
The Sackler family is a transatlantic dynasty that owns Purdue Pharma, which manufactures and markets OxyContin, one of the drugs at the centre of America's opioids crisis. The family is well known for their generous philanthropy towards the world's top cultural institutions, including Guggenheim Museum, the National Portrait Gallery, Tate in Britain, Yale University and the Serpentine Gallery, to name a few. Two branches of the family control Purdue Pharma.
Isaac Sackler and Sophie Greenberg were Jewish immigrants who arrived in New York before the First World War. They had three sons. The first, Arthur, died before OxyContin was invented. The second, Mortimer, who died aged 93 in 2010, was a former chief executive of Purdue Pharma. The third, Raymond, died aged 97 in 2017 and was also a former chief executive of Purdue Pharma.
It was Arthur, a psychiatrist and pharmaceutical marketeer, who started the family business dynasty. He and his brothers bought a small company called Purdue Frederick; among their first products were laxatives and prescription earwax remover.
Arthur's branch of the family has not been involved in Purdue for many years and his daughter, Elizabeth, has spoken out against it, saying the company's role in America's drugs crisis is "morally abhorrent".
The lawsuits that were brought by the attorneys general of New York and Massachussetts named eight Sacklers. This includes Kathe, Mortimer, Richard, Jonathan and Ilene Sackler Lefcourt, who are all the children of either Mortimer or Raymond. Then there's Theresa Sackler, who is Mortimer senior's widow; Beverly, Raymond's widow; and David Sackler, Raymond's grandson.
Members of the Sackler family are rarely seen in public.
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UAE currency: the story behind the money in your pockets
START-UPS%20IN%20BATCH%204%20OF%20SANABIL%20500'S%20ACCELERATOR%20PROGRAMME
%3Cp%3E%3Cstrong%3ESaudi%20Arabia%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EJoy%3A%3C%2Fstrong%3E%20Delivers%20car%20services%20with%20affordable%20prices%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EKaraz%3A%3C%2Fstrong%3E%20Helps%20diabetics%20with%20gamification%2C%20IoT%20and%20real-time%20data%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EMedicarri%3A%3C%2Fstrong%3E%20Medical%20marketplace%20that%20connects%20clinics%20with%20suppliers%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EMod5r%3C%2Fstrong%3E%3A%20Makes%20automated%20and%20recurring%20investments%20to%20grow%20wealth%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EStuck%3A%3C%2Fstrong%3E%20Live%2C%20on-demand%20language%20support%20to%20boost%20writing%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EWalzay%3A%3C%2Fstrong%3E%20Helps%20in%20recruitment%20while%20reducing%20hiring%20time%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EUAE%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EEighty6%3A%20%3C%2Fstrong%3EMarketplace%20for%20restaurant%20and%20supplier%20procurements%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EFarmUnboxed%3A%20%3C%2Fstrong%3EHelps%20digitise%20international%20food%20supply%20chain%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3ENutriCal%3A%3C%2Fstrong%3E%20Helps%20F%26amp%3BB%20businesses%20and%20governments%20with%20nutritional%20analysis%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EWellxai%3A%3C%2Fstrong%3E%20Provides%20insurance%20that%20enables%20and%20rewards%20user%20habits%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EEgypt%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EAmwal%3A%3C%2Fstrong%3E%20A%20Shariah-compliant%20crowd-lending%20platform%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EDeben%3A%3C%2Fstrong%3E%20Helps%20CFOs%20manage%20cash%20efficiently%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EEgab%3A%3C%2Fstrong%3E%20Connects%20media%20outlets%20to%20journalists%20in%20hard-to-reach%20areas%20for%20exclusives%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3ENeqabty%3A%3C%2Fstrong%3E%20Digitises%20financial%20and%20medical%20services%20of%20labour%20unions%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EOman%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EMonak%3A%3C%2Fstrong%3E%20Provides%20financial%20inclusion%20and%20life%20services%20to%20migrants%3C%2Fp%3E%0A
New schools in Dubai
Classification of skills
A worker is categorised as skilled by the MOHRE based on nine levels given in the International Standard Classification of Occupations (ISCO) issued by the International Labour Organisation.
A skilled worker would be someone at a professional level (levels 1 – 5) which includes managers, professionals, technicians and associate professionals, clerical support workers, and service and sales workers.
The worker must also have an attested educational certificate higher than secondary or an equivalent certification, and earn a monthly salary of at least Dh4,000.
KILLING OF QASSEM SULEIMANI
COMPANY PROFILE
Company name: Blah
Started: 2018
Founder: Aliyah Al Abbar and Hend Al Marri
Based: Dubai
Industry: Technology and talent management
Initial investment: Dh20,000
Investors: Self-funded
Total customers: 40
Trump v Khan
2016: Feud begins after Khan criticised Trump’s proposed Muslim travel ban to US
2017: Trump criticises Khan’s ‘no reason to be alarmed’ response to London Bridge terror attacks
2019: Trump calls Khan a “stone cold loser” before first state visit
2019: Trump tweets about “Khan’s Londonistan”, calling him “a national disgrace”
2022: Khan’s office attributes rise in Islamophobic abuse against the major to hostility stoked during Trump’s presidency
July 2025 During a golfing trip to Scotland, Trump calls Khan “a nasty person”
Sept 2025 Trump blames Khan for London’s “stabbings and the dirt and the filth”.
Dec 2025 Trump suggests migrants got Khan elected, calls him a “horrible, vicious, disgusting mayor”
The specs
Engine: 1.5-litre turbo
Power: 181hp
Torque: 230Nm
Transmission: 6-speed automatic
Starting price: Dh79,000
On sale: Now
Wicked: For Good
Director: Jon M Chu
Starring: Ariana Grande, Cynthia Erivo, Jonathan Bailey, Jeff Goldblum, Michelle Yeoh, Ethan Slater
Rating: 4/5
Company%20profile
%3Cp%3EName%3A%20Tabby%3Cbr%3EFounded%3A%20August%202019%3B%20platform%20went%20live%20in%20February%202020%3Cbr%3EFounder%2FCEO%3A%20Hosam%20Arab%2C%20co-founder%3A%20Daniil%20Barkalov%3Cbr%3EBased%3A%20Dubai%2C%20UAE%3Cbr%3ESector%3A%20Payments%3Cbr%3ESize%3A%2040-50%20employees%3Cbr%3EStage%3A%20Series%20A%3Cbr%3EInvestors%3A%20Arbor%20Ventures%2C%20Mubadala%20Capital%2C%20Wamda%20Capital%2C%20STV%2C%20Raed%20Ventures%2C%20Global%20Founders%20Capital%2C%20JIMCO%2C%20Global%20Ventures%2C%20Venture%20Souq%2C%20Outliers%20VC%2C%20MSA%20Capital%2C%20HOF%20and%20AB%20Accelerator.%3Cbr%3E%3C%2Fp%3E%0A
Starring: Jamie Foxx, Angela Bassett, Tina Fey
Directed by: Pete Doctor
Rating: 4 stars
ELIO
Starring: Yonas Kibreab, Zoe Saldana, Brad Garrett
Directors: Madeline Sharafian, Domee Shi, Adrian Molina
Rating: 4/5
Timeline
2012-2015
The company offers payments/bribes to win key contracts in the Middle East
May 2017
The UK SFO officially opens investigation into Petrofac’s use of agents, corruption, and potential bribery to secure contracts
September 2021
Petrofac pleads guilty to seven counts of failing to prevent bribery under the UK Bribery Act
October 2021
Court fines Petrofac £77 million for bribery. Former executive receives a two-year suspended sentence
December 2024
Petrofac enters into comprehensive restructuring to strengthen the financial position of the group
May 2025
The High Court of England and Wales approves the company’s restructuring plan
July 2025
The Court of Appeal issues a judgment challenging parts of the restructuring plan
August 2025
Petrofac issues a business update to execute the restructuring and confirms it will appeal the Court of Appeal decision
October 2025
Petrofac loses a major TenneT offshore wind contract worth €13 billion. Holding company files for administration in the UK. Petrofac delisted from the London Stock Exchange
November 2025
180 Petrofac employees laid off in the UAE
