Hearing a child’s first words is a landmark moment for any new parents.
But for the parents of Emirati twins it was an extra special moment when little Hamdan uttered the word "Baba"’ to his parents, marking the end of a miraculous journey.
When they were three months old, Hamdan and his brother Abdel were found to have spinal muscular atrophy, a rare neuromuscular disorder that can be fatal because it impairs breathing and swallowing.
The most important change is that they are able to breathe normally without oxygen support
Dr Hussein Nasser Matlik,
paediatrician and child neurologist
At Burjeel Hospital in Abu Dhabi, the twins recently celebrated the end of a course of gene therapy – and their first birthday – that will change their lives. The boys spent the past six months at the hospital receiving care, and were released this week.
“We reached a point where we had lost all hope,” said Rashid Al Hassani, the father of the boys.
“Thank God there has been a noticeable improvement in movement after the treatment.
“Not only have they started making sounds, but they are also managing to feed.”
While difficult to predict, almost all children (95 per cent) with spinal muscular atrophy have a life expectancy of less than 18 months without pharmacological treatment.
The disease is thankfully rare, and occurs in about one in 10,000 newborns.
A genetic test confirmed both babies had SMA1, a neuromuscular disease caused by a defective or missing survival motor neurone (SMN1) gene.
Both boys were placed on a ventilator to aid their breathing and required constant care.
Hamdan and Abdel received AVXS-101 (onasemnogene abeparvovec) gene therapy designed to target the missing SMN1 gene by delivering a functional copy to make enough proteins necessary for nerve function.
Gradual improvements to the twins’ motor skills, head and hand movements offered doctors a glimpse that their treatment would be a success. Both are now breathing unaided.
“There are remarkable improvements in both Hamdan and Abdel Aziz,” said Dr Hussein Nasser Matlik, a paediatrician and child neurologist.
“The most important change is that they are able to breathe normally without oxygen support.
"They can now maintain head control and are even sitting for a few seconds without support.
“All these achievements are not usually seen in one-year-old SMA patients without treatment.”
While the medical professionals will continue monitoring the improvement in motor development, the next course of action is to provide the twins with good rehabilitation support.
Through physiotherapy and occupational therapy, the focus will be on helping them to develop strength and the ability to move.
Although the condition is rare, Dr Matlik urged parents to pay close attention to the warning signs of SMA1, which include lethargy and a lack of movement.
“The parents are very happy seeing the twins interacting with them and gaining new milestones,” he said.
“They now need to experience emotional support and a sense of safety in their journey to recovery.
“If parents notice symptoms like muscle weakness or lack of motor development in their babies, it is imperative to get a check-up done immediately ... earlier treatment can lead to better recovery.”
Hamilton’s 2017
Australia - 2nd; China - 1st; Bahrain - 2nd; Russia - 4th; Spain - 1st; Monaco - 7th; Canada - 1st; Azerbaijan - 5th; Austria - 4th; Britain - 1st; Hungary - 4th; Belgium - 1st; Italy - 1st; Singapore - 1st; Malaysia - 2nd; Japan - 1st; United States - 1st; Mexico - 9th
Usain Bolt's time for the 100m at major championships
2008 Beijing Olympics 9.69 seconds
2009 Berlin World Championships 9.58
2011 Daegu World Championships Disqualified
2012 London Olympics 9.63
2013 Moscow World Championships 9.77
2015 Beijing World Championships 9.79
2016 Rio Olympics 9.81
2017 London World Championships 9.95
The specs
Engine: 4.0-litre flat-six
Torque: 450Nm at 6,100rpm
Transmission: 7-speed PDK auto or 6-speed manual
Fuel economy, combined: 13.8L/100km
On sale: Available to order now
Specs
Engine: Duel electric motors
Power: 659hp
Torque: 1075Nm
On sale: Available for pre-order now
Price: On request
UK-EU trade at a glance
EU fishing vessels guaranteed access to UK waters for 12 years
Co-operation on security initiatives and procurement of defence products
Youth experience scheme to work, study or volunteer in UK and EU countries
Smoother border management with use of e-gates
Cutting red tape on import and export of food
Volvo ES90 Specs
Engine: Electric single motor (96kW), twin motor (106kW) and twin motor performance (106kW)
Power: 333hp, 449hp, 680hp
Torque: 480Nm, 670Nm, 870Nm
On sale: Later in 2025 or early 2026, depending on region
Price: Exact regional pricing TBA
MATCH INFO
Rugby World Cup (all times UAE)
Third-place play-off: New Zealand v Wales, Friday, 1pm
UJDA CHAMAN
Produced: Panorama Studios International
Directed: Abhishek Pathak
Cast: Sunny Singh, Maanvi Gagroo, Grusha Kapoor, Saurabh Shukla
Rating: 3.5 /5 stars
Company%20profile%20
%3Cp%3E%3Cstrong%3EName%3A%20%3C%2Fstrong%3EElggo%3Cbr%3E%3Cstrong%3EStarted%3A%3C%2Fstrong%3E%20August%202022%3Cbr%3E%3Cstrong%3EFounders%3A%3C%2Fstrong%3E%20Luma%20Makari%20and%20Mirna%20Mneimneh%3Cbr%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20Dubai%2C%20UAE%3Cbr%3E%3Cstrong%3ESector%3A%3C%2Fstrong%3E%20Education%20technology%20%2F%20health%20technology%3Cbr%3E%3Cstrong%3ESize%3A%3C%2Fstrong%3E%20Four%20employees%3Cbr%3E%3Cstrong%3EInvestment%20stage%3A%3C%2Fstrong%3E%20Pre-seed%3C%2Fp%3E%0A
LA LIGA FIXTURES
Friday (UAE kick-off times)
Levante v Real Mallorca (12am)
Leganes v Barcelona (4pm)
Real Betis v Valencia (7pm)
Granada v Atletico Madrid (9.30pm)
Sunday
Real Madrid v Real Sociedad (12am)
Espanyol v Getafe (3pm)
Osasuna v Athletic Bilbao (5pm)
Eibar v Alaves (7pm)
Villarreal v Celta Vigo (9.30pm)
Monday
Real Valladolid v Sevilla (12am)
THE SIXTH SENSE
Starring: Bruce Willis, Toni Collette, Hayley Joel Osment
Director: M. Night Shyamalan
Rating: 5/5
Company profile
Date started: December 24, 2018
Founders: Omer Gurel, chief executive and co-founder and Edebali Sener, co-founder and chief technology officer
Based: Dubai Media City
Number of employees: 42 (34 in Dubai and a tech team of eight in Ankara, Turkey)
Sector: ConsumerTech and FinTech
Cashflow: Almost $1 million a year
Funding: Series A funding of $2.5m with Series B plans for May 2020
At a glance - Zayed Sustainability Prize 2020
Launched: 2008
Categories: Health, energy, water, food, global high schools
Prize: Dh2.2 million (Dh360,000 for global high schools category)
Winners’ announcement: Monday, January 13
Impact in numbers
335 million people positively impacted by projects
430,000 jobs created
10 million people given access to clean and affordable drinking water
50 million homes powered by renewable energy
6.5 billion litres of water saved
26 million school children given solar lighting
Key figures in the life of the fort
Sheikh Dhiyab bin Isa (ruled 1761-1793) Built Qasr Al Hosn as a watchtower to guard over the only freshwater well on Abu Dhabi island.
Sheikh Shakhbut bin Dhiyab (ruled 1793-1816) Expanded the tower into a small fort and transferred his ruling place of residence from Liwa Oasis to the fort on the island.
Sheikh Tahnoon bin Shakhbut (ruled 1818-1833) Expanded Qasr Al Hosn further as Abu Dhabi grew from a small village of palm huts to a town of more than 5,000 inhabitants.
Sheikh Khalifa bin Shakhbut (ruled 1833-1845) Repaired and fortified the fort.
Sheikh Saeed bin Tahnoon (ruled 1845-1855) Turned Qasr Al Hosn into a strong two-storied structure.
Sheikh Zayed bin Khalifa (ruled 1855-1909) Expanded Qasr Al Hosn further to reflect the emirate's increasing prominence.
Sheikh Shakhbut bin Sultan (ruled 1928-1966) Renovated and enlarged Qasr Al Hosn, adding a decorative arch and two new villas.
Sheikh Zayed bin Sultan (ruled 1966-2004) Moved the royal residence to Al Manhal palace and kept his diwan at Qasr Al Hosn.
Sources: Jayanti Maitra, www.adach.ae
The biog
Favourite films: Casablanca and Lawrence of Arabia
Favourite books: Start with Why by Simon Sinek and Good to be Great by Jim Collins
Favourite dish: Grilled fish
Inspiration: Sheikh Zayed's visionary leadership taught me to embrace new challenges.
THE BIO
Age: 33
Favourite quote: “If you’re going through hell, keep going” Winston Churchill
Favourite breed of dog: All of them. I can’t possibly pick a favourite.
Favourite place in the UAE: The Stray Dogs Centre in Umm Al Quwain. It sounds predictable, but it honestly is my favourite place to spend time. Surrounded by hundreds of dogs that love you - what could possibly be better than that?
Favourite colour: All the colours that dogs come in
The five new places of worship
Church of South Indian Parish
St Andrew's Church Mussaffah branch
St Andrew's Church Al Ain branch
St John's Baptist Church, Ruwais
Church of the Virgin Mary and St Paul the Apostle, Ruwais
GOLF’S RAHMBO
- 5 wins in 22 months as pro
- Three wins in past 10 starts
- 45 pro starts worldwide: 5 wins, 17 top 5s
- Ranked 551th in world on debut, now No 4 (was No 2 earlier this year)
- 5th player in last 30 years to win 3 European Tour and 2 PGA Tour titles before age 24 (Woods, Garcia, McIlroy, Spieth)
Best Foreign Language Film nominees
Capernaum (Lebanon)
Cold War (Poland)
Never Look Away (Germany)
Roma (Mexico)
Shoplifters (Japan)
The full list of 2020 Brit Award nominees (winners in bold):
British group
Coldplay
Foals
Bring me the Horizon
D-Block Europe
Bastille
British Female
Mabel
Freya Ridings
FKA Twigs
Charli xcx
Mahalia
British male
Harry Styles
Lewis Capaldi
Dave
Michael Kiwanuka
Stormzy
Best new artist
Aitch
Lewis Capaldi
Dave
Mabel
Sam Fender
Best song
Ed Sheeran and Justin Bieber - I Don’t Care
Mabel - Don’t Call Me Up
Calvin Harrison and Rag’n’Bone Man - Giant
Dave - Location
Mark Ronson feat. Miley Cyrus - Nothing Breaks Like A Heart
AJ Tracey - Ladbroke Grove
Lewis Capaldi - Someone you Loved
Tom Walker - Just You and I
Sam Smith and Normani - Dancing with a Stranger
Stormzy - Vossi Bop
International female
Ariana Grande
Billie Eilish
Camila Cabello
Lana Del Rey
Lizzo
International male
Bruce Springsteen
Burna Boy
Tyler, The Creator
Dermot Kennedy
Post Malone
Best album
Stormzy - Heavy is the Head
Michael Kiwanuka - Kiwanuka
Lewis Capaldi - Divinely Uninspired to a Hellish Extent
Dave - Psychodrama
Harry Styles - Fine Line
Rising star
Celeste
Joy Crookes
beabadoobee
'The worst thing you can eat'
Trans fat is typically found in fried and baked goods, but you may be consuming more than you think.
Powdered coffee creamer, microwave popcorn and virtually anything processed with a crust is likely to contain it, as this guide from Mayo Clinic outlines:
Baked goods - Most cakes, cookies, pie crusts and crackers contain shortening, which is usually made from partially hydrogenated vegetable oil. Ready-made frosting is another source of trans fat.
Snacks - Potato, corn and tortilla chips often contain trans fat. And while popcorn can be a healthy snack, many types of packaged or microwave popcorn use trans fat to help cook or flavour the popcorn.
Fried food - Foods that require deep frying — french fries, doughnuts and fried chicken — can contain trans fat from the oil used in the cooking process.
Refrigerator dough - Products such as canned biscuits and cinnamon rolls often contain trans fat, as do frozen pizza crusts.
Creamer and margarine - Nondairy coffee creamer and stick margarines also may contain partially hydrogenated vegetable oils.
Tips for taking the metro
- set out well ahead of time
- make sure you have at least Dh15 on you Nol card, as there could be big queues for top-up machines
- enter the right cabin. The train may be too busy to move between carriages once you're on
- don't carry too much luggage and tuck it under a seat to make room for fellow passengers
UAE currency: the story behind the money in your pockets
Race card
5pm: Maiden (PA) Dh80,000 1,600m
5.30pm: Maiden (PA) Dh80,000 1,600m
6pm: Arabian Triple Crown Round-2 Group 3 (PA) Dh300,000 2,200m
6.30pm: Liwa Oaisi Group 2 (PA) Dh300,000 1,400m
7pm: Wathba Stallions Cup Handicap (PA) Dh70,000 1,600m
7.30pm: Handicap (TB) Dh100,000 1,600m
The National selections: 5pm: Flit Al Maury, 5.30pm: Sadah, 6pm: RB Seqondtonone, 6.30pm: RB Money To Burn, 7pm: SS Jalmood, 7.30pm: Dalaalaat
More on Turkey's Syria offence
Results
5pm Maiden (PA) Dh80,000 1,400m
Winner No Riesgo Al Maury, Szczepan Mazur (jockey), Ibrahim Al Hadhrami (trainer)
5.30pm Handicap (PA) Dh80,000 1,600m
Winner Marwa W’Rsan, Sam Hitchcott, Jaci Wickham.
6pm Handicap (PA) Dh80,000 1,600m
Winner Dahess D’Arabie, Al Moatasem Al Balushi, Helal Al Alawi.
6.30pm Handicap (PA) Dh80,000 2,200m
Winner Safin Al Reef, Connor Beasley, Abdallah Al Hammadi.
7pm Wathba Stallions Cup Handicap (PA) Dh70,000 2,200m
Winner Thulbaseera Al Jasra, Shakir Al Balushi, Ibrahim Al Hadhrami.
7.30pm Maiden (TB) Dh 80,000 2,200m
Winner Autumn Pride, Szczepan Mazur, Helal Al Alawi.
Coal Black Mornings
Brett Anderson
Little Brown Book Group
hall of shame
SUNDERLAND 2002-03
No one has ended a Premier League season quite like Sunderland. They lost each of their final 15 games, taking no points after January. They ended up with 19 in total, sacking managers Peter Reid and Howard Wilkinson and losing 3-1 to Charlton when they scored three own goals in eight minutes.
SUNDERLAND 2005-06
Until Derby came along, Sunderland’s total of 15 points was the Premier League’s record low. They made it until May and their final home game before winning at the Stadium of Light while they lost a joint record 29 of their 38 league games.
HUDDERSFIELD 2018-19
Joined Derby as the only team to be relegated in March. No striker scored until January, while only two players got more assists than goalkeeper Jonas Lossl. The mid-season appointment Jan Siewert was to end his time as Huddersfield manager with a 5.3 per cent win rate.
ASTON VILLA 2015-16
Perhaps the most inexplicably bad season, considering they signed Idrissa Gueye and Adama Traore and still only got 17 points. Villa won their first league game, but none of the next 19. They ended an abominable campaign by taking one point from the last 39 available.
FULHAM 2018-19
Terrible in different ways. Fulham’s total of 26 points is not among the lowest ever but they contrived to get relegated after spending over £100 million (Dh457m) in the transfer market. Much of it went on defenders but they only kept two clean sheets in their first 33 games.
LA LIGA: Sporting Gijon, 13 points in 1997-98.
BUNDESLIGA: Tasmania Berlin, 10 points in 1965-66
Top financial tips for graduates
Araminta Robertson, of the Financially Mint blog, shares her financial advice for university leavers:
1. Build digital or technical skills: After graduation, people can find it extremely hard to find jobs. From programming to digital marketing, your early twenties are for building skills. Future employers will want people with tech skills.
2. Side hustle: At 16, I lived in a village and started teaching online, as well as doing work as a virtual assistant and marketer. There are six skills you can use online: translation; teaching; programming; digital marketing; design and writing. If you master two, you’ll always be able to make money.
3. Networking: Knowing how to make connections is extremely useful. Use LinkedIn to find people who have the job you want, connect and ask to meet for coffee. Ask how they did it and if they know anyone who can help you. I secured quite a few clients this way.
4. Pay yourself first: The minute you receive any income, put about 15 per cent aside into a savings account you won’t touch, to go towards your emergency fund or to start investing. I do 20 per cent. It helped me start saving immediately.
The winners
Fiction
- ‘Amreekiya’ by Lena Mahmoud
- ‘As Good As True’ by Cheryl Reid
The Evelyn Shakir Non-Fiction Award
- ‘Syrian and Lebanese Patricios in Sao Paulo’ by Oswaldo Truzzi; translated by Ramon J Stern
- ‘The Sound of Listening’ by Philip Metres
The George Ellenbogen Poetry Award
- ‘Footnotes in the Order of Disappearance’ by Fady Joudah
Children/Young Adult
- ‘I’ve Loved You Since Forever’ by Hoda Kotb
PROFILE OF HALAN
Started: November 2017
Founders: Mounir Nakhla, Ahmed Mohsen and Mohamed Aboulnaga
Based: Cairo, Egypt
Sector: transport and logistics
Size: 150 employees
Investment: approximately $8 million
Investors include: Singapore’s Battery Road Digital Holdings, Egypt’s Algebra Ventures, Uber co-founder and former CTO Oscar Salazar
The five pillars of Islam
1. Fasting
2. Prayer
3. Hajj
4. Shahada
5. Zakat
The specs
Engine: 2.9-litre, V6 twin-turbo
Transmission: seven-speed PDK dual clutch automatic
Power: 375bhp
Torque: 520Nm
Price: Dh332,800
On sale: now
The%20Afghan%20connection
%3Cp%3EThe%20influx%20of%20talented%20young%20Afghan%20players%20to%20UAE%20cricket%20could%20have%20a%20big%20impact%20on%20the%20fortunes%20of%20both%20countries.%20Here%20are%20three%20Emirates-based%20players%20to%20watch%20out%20for.%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3EHassan%20Khan%20Eisakhil%3C%2Fstrong%3E%0D%3Cbr%3EMohammed%20Nabi%20is%20still%20proving%20his%20worth%20at%20the%20top%20level%20but%20there%20is%20another%20reason%20he%20is%20raging%20against%20the%20idea%20of%20retirement.%20If%20the%20allrounder%20hangs%20on%20a%20little%20bit%20longer%2C%20he%20might%20be%20able%20to%20play%20in%20the%20same%20team%20as%20his%20son%2C%20Hassan%20Khan.%20The%20family%20live%20in%20Ajman%20and%20train%20in%20Sharjah.%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3EMasood%20Gurbaz%3C%2Fstrong%3E%0D%3Cbr%3EThe%20opening%20batter%2C%20who%20trains%20at%20Sharjah%20Cricket%20Academy%2C%20is%20another%20player%20who%20is%20a%20part%20of%20a%20famous%20family.%20His%20brother%2C%20Rahmanullah%2C%20was%20an%20IPL%20winner%20with%20Kolkata%20Knight%20Riders%2C%20and%20opens%20the%20batting%20with%20distinction%20for%20Afghanistan.%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3EOmid%20Rahman%3C%2Fstrong%3E%0D%3Cbr%3EThe%20fast%20bowler%20became%20a%20pioneer%20earlier%20this%20year%20when%20he%20became%20the%20first%20Afghan%20to%20represent%20the%20UAE.%20He%20showed%20great%20promise%20in%20doing%20so%2C%20too%2C%20playing%20a%20key%20role%20in%20the%20senior%20team%E2%80%99s%20qualification%20for%20the%20Asia%20Cup%20in%20Muscat%20recently.%0D%3Cbr%3E%3C%2Fp%3E%0A
