Imagine suffering excruciating pain for every second of your life, where every part of your body constantly itches and tears into open wounds that never heal.
This is the reality for the "butterfly children", who have skin as fragile as a butterfly wing. Even the slightest scratch can create a blister.
The disorder is caused by epidermolysis bullosa (EB), a rare, genetic skin disorder for which there is no cure.
Those with the most severe form of the disease die before they reach the age of five, and those ith the disorder who live beyond that struggle with constant pain and irritation.
Every bathing day was a nightmare for the whole house. Imagine a small body that is mostly skinless. Yet after every bath, Saleh would try to smile and tell me, “I am done baba. It is all done now. Don’t be sad"
Jaafar Al Ameri
At present there is no cure, but doctors in the UAE are striving to improve the quality of life of children born with the condition, with one of the first comprehensive clinics in the region for EB.
Dr Shaden Abdelhadi is an Emirati paediatric dermatology consultant who established the new clinic at Sheikh Khalifa Medical City in Abu Dhabi.
“This disease is tragic and frustrating for the children and their parents. Sadly, it is not rewarding or appealing for physicians," said Dr Abdelhadi, who specialises in human genetic skin disorders.
"It requires a lot of attention, knowledge, an open heart, and a passion for dealing with it.
“Nobody in the world can cure this disease at present, but we have many examples where proper care and management can give the children hope, and support their quality of life."
There are no happy endings for children with EB, so pain management is a priority, because the dressings on their wounds have to be changed every few hours to prevent infection.
Ghaith, 11, has not let his condition get in the way of him living his life like any other child.
The young boy, whose body is covered in open sores, goes to a government school in Abu Dhabi, plays with friends and enjoys playing computer games.
His father, Adel Hassan, said: “I’ve tried my best to make him live as normal a life as possible.”
Gaith’s mother tries to hide her tears every time she changes the gauze covering his wounds – an exercise that causes him to scream in agony.
“We know that he is in pain, but there is nothing we can do about it," she said. "If the dressings are not regularly changed and cleaned then the infection will get worse."
“I know that children with EB don’t live long, but I have faith in God,” the father of three said.
The severity of the disease varies – some patients live for many years – and those with an acute case must be covered entirely in protective and antibacterial dressing, and may have their fingers and toes fused to protect them from injury.
The disorder is notoriously difficult to treat because patients with EB suffer from many comorbidities, including dental and malnutrition problems, swallowing difficulties, eye problems, sleep disturbance, pain, and limited movement.
The new clinic is staffed by nine paediatric specialists to meet all the children's clinical needs in one convenient location, Dr Abdelhadi said.
"All that I want for these children is to bring them adequate attention, reduce their pain and discomfort, and make their lives as comfortable as possible.
"We work in aseptic conditions together with a team of highly qualified wound nurses. We also provide training to homecare nurses, other caregivers, and family members.
"We stand hand in hand with affected patients and their families throughout their EB journey."
EB is an inherited disorder and cases commonly occur in the same family. This can be prevented, Dr Abdelhadi said.
"We provide parents with detailed genetic counselling and encourage them and other family members to take all the necessary measures to eliminate the re-occurrence of risk in future offspring,” she said.
A parent's pain
Five months after losing his seven-year-old son to EB, Jaafar Al Ameri can still hear his son Saleh’s screams.
“This was one of the most difficult things that I have experienced in my life. I would not wish it on anyone," he said.
"It is difficult to helplessly stand by and watch your son suffer knowing full well that there was nothing you could do about it.”
It is customary for fathers to be called after their first-born sons. Mr Al Ameri, 40, has five other sons and four daughters – Saleh was his middle child.
Nevertheless, he insists on being called Abu Saleh, or father of Saleh.
“I will always be called Abu Saleh. I have never loved anyone or been attached to anyone as much as I was attached to Saleh,” he said.
The gauze and wound dressings of patients with EB have to be changed at least twice a day and they have to be bathed at least every two to three days.
The baths and dressing changes take three hours and are incredibly painful.
This disease is tragic and frustrating for the children and their parents. Sadly, it is not rewarding or appealing for physicians. It requires a lot of attention, knowledge, an open heart, and a passion for dealing with it
Dr Shaden Abdelhadi,
Sheikh Khalifa Medical City
Every parent of a child with EB dreads those moments, but they are necessary to prevent infection.
There is nothing that can stop the pain and children with EB can take only over-the-counter pain medication.
“Every bathing day was a nightmare for the whole house. Imagine a small body that is mostly skinless. The baths were the true meaning of suffering for him and everyone around,” Mr Al Ameri said.
“Yet after every change and bath, Saleh would look at me and try to smile and tell me, 'I am done baba. It is all done now. Don’t be sad'.
"I have never seen anyone braver and with more courage than him,” the Emirati father said.
Saleh died in January from sepsis resulting from all his wounds.
“When I carried his small body to wash him there was nothing except bones and blood. He had no skin. I didn’t know how to wash him,” his father said.
"If I would like to see anything come out of this experience, I would suggest a specialised centre.
“This experience was very, very hard. You wouldn’t want to see your child suffering every second of the day like we did. Please get tested before deciding to have a child if you’ve had any cases of EB in the family."
Muslim Council of Elders condemns terrorism on religious sites
The Muslim Council of Elders has strongly condemned the criminal attacks on religious sites in Britain.
It firmly rejected “acts of terrorism, which constitute a flagrant violation of the sanctity of houses of worship”.
“Attacking places of worship is a form of terrorism and extremism that threatens peace and stability within societies,” it said.
The council also warned against the rise of hate speech, racism, extremism and Islamophobia. It urged the international community to join efforts to promote tolerance and peaceful coexistence.
COMPANY%20PROFILE
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Brief scoreline:
Liverpool 2
Keita 5', Firmino 26'
Porto 0
Saturday's schedule at the Abu Dhabi Grand Prix
GP3 race, 12:30pm
Formula 1 final practice, 2pm
Formula 1 qualifying, 5pm
Formula 2 race, 6:40pm
Performance: Sam Smith
RoboCop%3A%20Rogue%20City
%3Cp%3E%3Cstrong%3EDeveloper%3A%20%3C%2Fstrong%3ETeyon%3Cbr%3E%3Cstrong%3EPublisher%3A%20%3C%2Fstrong%3ENacon%3Cbr%3E%3Cstrong%3EConsole%3A%3C%2Fstrong%3E%20PlayStation%205%2C%20Xbox%20Series%20X%2FS%20and%20PC%3Cbr%3E%3Cstrong%3ERating%3A%20%3C%2Fstrong%3E3%2F5%3C%2Fp%3E%0A
The specs: 2017 Dodge Ram 1500 Laramie Longhorn
Price, base / as tested: Dhxxx
Engine: 5.7L V8
Transmission: Eight-speed automatic
Power: 395hp @ 5,600rpm
Torque: 556Nm @ 3,950rpm
Fuel economy, combined: 12.7L / 100km
Most sought after workplace benefits in the UAE
- Flexible work arrangements
- Pension support
- Mental well-being assistance
- Insurance coverage for optical, dental, alternative medicine, cancer screening
- Financial well-being incentives
Who has been sanctioned?
Daniella Weiss and Nachala
Described as 'the grandmother of the settler movement', she has encouraged the expansion of settlements for decades. The 79 year old leads radical settler movement Nachala, whose aim is for Israel to annex Gaza and the occupied West Bank, where it helps settlers built outposts.
Harel Libi & Libi Construction and Infrastructure
Libi has been involved in threatening and perpetuating acts of aggression and violence against Palestinians. His firm has provided logistical and financial support for the establishment of illegal outposts.
Zohar Sabah
Runs a settler outpost named Zohar’s Farm and has previously faced charges of violence against Palestinians. He was indicted by Israel’s State Attorney’s Office in September for allegedly participating in a violent attack against Palestinians and activists in the West Bank village of Muarrajat.
Coco’s Farm and Neria’s Farm
These are illegal outposts in the West Bank, which are at the vanguard of the settler movement. According to the UK, they are associated with people who have been involved in enabling, inciting, promoting or providing support for activities that amount to “serious abuse”.
TO A LAND UNKNOWN
Director: Mahdi Fleifel
Starring: Mahmoud Bakri, Aram Sabbah, Mohammad Alsurafa
Rating: 4.5/5
SPECS
Engine: 4-litre V8 twin-turbo
Power: 630hp
Torque: 850Nm
Transmission: 8-speed Tiptronic automatic
Price: From Dh599,000
On sale: Now
SPECS
Engine: Two-litre four-cylinder turbo
Power: 235hp
Torque: 350Nm
Transmission: Nine-speed automatic
Price: From Dh167,500 ($45,000)
On sale: Now
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
COMPANY%20PROFILE
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UPI facts
More than 2.2 million Indian tourists arrived in UAE in 2023
More than 3.5 million Indians reside in UAE
Indian tourists can make purchases in UAE using rupee accounts in India through QR-code-based UPI real-time payment systems
Indian residents in UAE can use their non-resident NRO and NRE accounts held in Indian banks linked to a UAE mobile number for UPI transactions
Results
- Brock Lesnar retained the WWE Universal title against Roman Reigns
- Braun Strowman and Nicolas won the Raw Tag Team titles against Sheamus and Cesaro
- AJ Styles retained the WWE World Heavyweight title against Shinsuke Nakamura
- Nia Jax won the Raw Women’s title against Alexa Bliss
- Daniel Bryan and Shane McMahon beat Kevin Owens and Sami Zayn
- The Undertaker beat John Cena
- The Bludgeon Brothers won the SmackDown Tag Team titles against the Usos and New Day
- Ronda Rousey and Kurt Angle beat Triple H and Stephanie McMahon
- Jinder Mahal won the United States title against Randy Orton, Rusev and Bobby Roode
- Charlotte retained the SmackDown Women’s title against Asuka
- Seth Rollins won the Intercontinental title against The Miz and Finn Balor
- Naomi won the first WrestleMania Women’s Battle Royal
- Cedric Alexander won the vacant Cruiserweight title against Mustafa Ali
- Matt Hardy won the Andre the Giant Battle Royal
MATCH INFO
Europa League final
Marseille 0
Atletico Madrid 3
Greizmann (21', 49'), Gabi (89')
ENGLAND SQUAD
Joe Root (c), Moeen Ali, Jimmy Anderson, Jonny Bairstow, Stuart Broad, Jos Buttler, Alastair Cook, Sam Curran, Keaton Jennings, Ollie Pope, Adil Rashid, Ben Stokes, James Vince, Chris Woakes
MATCH INFO
World Cup 2022 qualifier
UAE v Indonesia, Thursday, 8pm
Venue: Al Maktoum Stadium, Dubai
APPLE IPAD MINI (A17 PRO)
Display: 21cm Liquid Retina Display, 2266 x 1488, 326ppi, 500 nits
Chip: Apple A17 Pro, 6-core CPU, 5-core GPU, 16-core Neural Engine
Storage: 128/256/512GB
Main camera: 12MP wide, f/1.8, digital zoom up to 5x, Smart HDR 4
Front camera: 12MP ultra-wide, f/2.4, Smart HDR 4, full-HD @ 25/30/60fps
Biometrics: Touch ID, Face ID
Colours: Blue, purple, space grey, starlight
In the box: iPad mini, USB-C cable, 20W USB-C power adapter
Price: From Dh2,099
Summer special
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
Ferrari 12Cilindri specs
Engine: naturally aspirated 6.5-liter V12
Power: 819hp
Torque: 678Nm at 7,250rpm
Price: From Dh1,700,000
Available: Now
COMPANY PROFILE
Initial investment: Undisclosed
Investment stage: Series A
Investors: Core42
Current number of staff: 47
Expert input
If you had all the money in the world, what’s the one sneaker you would buy or create?
“There are a few shoes that have ‘grail’ status for me. But the one I have always wanted is the Nike x Patta x Parra Air Max 1 - Cherrywood. To get a pair in my size brand new is would cost me between Dh8,000 and Dh 10,000.” Jack Brett
“If I had all the money, I would approach Nike and ask them to do my own Air Force 1, that’s one of my dreams.” Yaseen Benchouche
“There’s nothing out there yet that I’d pay an insane amount for, but I’d love to create my own shoe with Tinker Hatfield and Jordan.” Joshua Cox
“I think I’d buy a defunct footwear brand; I’d like the challenge of reinterpreting a brand’s history and changing options.” Kris Balerite
“I’d stir up a creative collaboration with designers Martin Margiela of the mixed patchwork sneakers, and Yohji Yamamoto.” Hussain Moloobhoy
“If I had all the money in the world, I’d live somewhere where I’d never have to wear shoes again.” Raj Malhotra
MATCH INFO
Tottenham Hotspur 3 (Son 1', Kane 8' & 16') West Ham United 3 (Balbuena 82', Sanchez og 85', Lanzini 90' 4)
Man of the match Harry Kane
The specs
- Engine: 3.9-litre twin-turbo V8
- Power: 640hp
- Torque: 760nm
- On sale: 2026
- Price: Not announced yet
F1 The Movie
Starring: Brad Pitt, Damson Idris, Kerry Condon, Javier Bardem
Director: Joseph Kosinski
Rating: 4/5
Kibsons%20Cares
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UAE currency: the story behind the money in your pockets
if you go
The flights
Air Astana flies direct from Dubai to Almaty from Dh2,440 per person return, and to Astana (via Almaty) from Dh2,930 return, both including taxes.
The hotels
Rooms at the Ritz-Carlton Almaty cost from Dh1,944 per night including taxes; and in Astana the new Ritz-Carlton Astana (www.marriott) costs from Dh1,325; alternatively, the new St Regis Astana costs from Dh1,458 per night including taxes.
When to visit
March-May and September-November
Visas
Citizens of many countries, including the UAE do not need a visa to enter Kazakhstan for up to 30 days. Contact the nearest Kazakhstan embassy or consulate.
FA CUP FINAL
Manchester City 6
(D Silva 26', Sterling 38', 81', 87', De Bruyne 61', Jesus 68')
Watford 0
Man of the match: Bernardo Silva (Manchester City)
Squid Game season two
Director: Hwang Dong-hyuk
Stars: Lee Jung-jae, Wi Ha-joon and Lee Byung-hun
Rating: 4.5/5
LOS ANGELES GALAXY 2 MANCHESTER UNITED 5
Galaxy: Dos Santos (79', 88')
United: Rashford (2', 20'), Fellaini (26'), Mkhitaryan (67'), Martial (72')
The specs: 2017 GMC Sierra 1500 Denali
Price, base / as tested Dh207,846 / Dh220,000
Engine 6.2L V8
Transmission Eight-speed automatic
Power 420hp @ 5,600rpm
Torque 624Nm @ 4,100rpm
Fuel economy, combined 13.5L / 100km
Dubai Bling season three
Cast: Loujain Adada, Zeina Khoury, Farhana Bodi, Ebraheem Al Samadi, Mona Kattan, and couples Safa & Fahad Siddiqui and DJ Bliss & Danya Mohammed
Rating: 1/5
The%20specs
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