Landmarks in the UAE turned blue on Monday night to shine a light on a disorder so rare that many doctors have never heard of it.
Dubai Frame, as well as several attractions on Yas Island in the capital, including Ferrari World, Warner Bros World Abu Dhabi and Clymb, lit up to mark International Angelman Day.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system and occurs in one in about 20,000 people.
It is associated with delayed development, problems with speech and balance, intellectual disability and sometimes seizures.
The condition brings its challenges. But I have faith and hope in terms of what his brain is capable of
People with the syndrome often smile, laugh frequently, and have a generally sunny disposition.
There are more than 11 families with children who suffer from the condition in the UAE, according to Em Ray, who organised the event.
Her son, Sam, was 20 months-old when the condition was diagnosed.
She frequently campaigns on social media for greater understanding of the condition.
Sam, now five-and-a-half, has achieved many milestones doctors said he would never attain, such as walking on his own. He is now also toilet-trained during the day and confident walking on stairs and uneven surfaces.
"We have had two new families diagnosed recently," said Ms Ray, who is from the UK.
“The key reason of raising awareness like this, and raising it all over Dubai is not just educating other people.
“It is so that in the future, that next family whose child will be diagnosed is going to look on social media and they are going to find all the articles and then they can reach me, which is what they did recently.”
Rhian Adams is the mother of one of the children recently confirmed to have Angelman Syndrome.
Samson Oliver Turton, who is 14 months, had the condition diagnosed when he was 10 months old after a vaccination visit flagged potential issues.
“There were signs from about five months, when he wasn’t sitting up and wasn’t crawling, wasn’t reaching out and grabbing things,” said the 35-year-old from Wales.
“Then at eight months when we went to have vaccines the paediatrician was quite concerned by his low muscle tone and inability to roll or have tummy time.”
After two months of investigations, including a brain scan, a doctor ordered a full genetic blood screening, which revealed the diagnosis.
“That took about three to six weeks to come back and we had a phone call to come in to see them. In the initial meeting they said if we call you to come in, it’s probably something serious. So we knew it was bad news,” she said.
Even doctors she has subsequently seen in the UAE have never heard of the condition, she said.
Ms Adams marked the day by taking part in a beach walk with her son and members of Help for Heroes, which was also attended by two other children with Angelman Syndrome.
Support from other Angelman families has been vital since the diagnosis, she said.
“Emily Ray called me two days after and I spoke to her for about 50 minutes.
"I came off the phone and I just felt everything is going to be OK. I literally had never heard of it and I didn't know of anyone.
“The condition brings its challenges. But I have faith and hope in terms of what his brain is capable of.”
UAE currency: the story behind the money in your pockets
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WEST ASIA RUGBY 2017/18 SEASON ROLL OF HONOUR
Western Clubs Champions League
Winners: Abu Dhabi Harlequins
Runners up: Bahrain
Dubai Rugby Sevens
Winners: Dubai Exiles
Runners up: Jebel Ali Dragons
West Asia Premiership
Winners: Jebel Ali Dragons
Runners up: Abu Dhabi Harlequins
UAE Premiership Cup
Winners: Abu Dhabi Harlequins
Runners up: Dubai Exiles
UAE Premiership
Winners: Dubai Exiles
Runners up: Abu Dhabi Harlequins
Jiu-jitsu calendar of events for 2017-2018:
August 5:
Round-1 of the President’s Cup in Al Ain.
August 11-13:
Asian Championship in Vietnam.
September 8-9:
Ajman International.
September 16-17
Asian Indoor and Martial Arts Games, Ashgabat.
September 22-24:
IJJF Balkan Junior Open, Montenegro.
September 23-24:
Grand Slam Los Angeles.
September 29:
Round-1 Mother of The Nation Cup.
October 13-14:
Al Ain U18 International.
September 20-21:
Al Ain International.
November 3:
Round-2 Mother of The National Cup.
November 4:
Round-2 President’s Cup.
November 10-12:
Grand Slam Rio de Janeiro.
November 24-26:
World Championship, Columbia.
November 30:
World Beach Championship, Columbia.
December 8-9:
Dubai International.
December 23:
Round-3 President’s Cup, Sharjah.
January 12-13:
Grand Slam Abu Dhabi.
January 26-27:
Fujairah International.
February 3:
Round-4 President’s Cup, Al Dhafra.
February 16-17:
Ras Al Khaimah International.
February 23-24:
The Challenge Championship.
March 10-11:
Grand Slam London.
March 16:
Final Round – Mother of The Nation.
March 17:
Final Round – President’s Cup.
MATCH INFO
South Africa 66 (Tries: De Allende, Nkosi, Reinach (3), Gelant, Steyn, Brits, Willemse; Cons: Jantjies 8)
Canada 7 (Tries: Heaton; Cons: Nelson)
RESULTS
5pm: Maiden (PA) Dh80,000 1,200m
Winner: Shafaf, Sam Hitchcott (jockey), Ahmed Al Mehairbi (trainer)
5,30pm: Wathba Stallions Cup Handicap (PA) Dh70,000 1,200m
Winner: Noof KB, Tadhg O’Shea, Ernst Oertel
6pm: The President’s Cup Listed (TB) Dh380,000 1,400m
Winner: Taamol, Jim Crowley, Ali Rashid Al Raihe
6.30pm: The President’s Cup Group One (PA) Dh2,500,000 2,200m
Winner: Rmmas, Tadhg O’Shea, Jean de Roualle
7pm: Arabian Triple Crown Listed (PA) Dh230,000 1,600m
Winner: Ihtesham, Szczepan Mazur, Ibrahim Al Hadhrami
7.30pm: Handicap (PA) Dh80,000 1,400m
Winner: AF Mekhbat, Antonio Fresu, Ernst Oertel
Company%20profile
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The specs: 2018 Opel Mokka X
Price, as tested: Dh84,000
Engine: 1.4L, four-cylinder turbo
Transmission: Six-speed auto
Power: 142hp at 4,900rpm
Torque: 200Nm at 1,850rpm
Fuel economy, combined: 6.5L / 100km
Our family matters legal consultant
Name: Hassan Mohsen Elhais
Position: legal consultant with Al Rowaad Advocates and Legal Consultants.
F1 The Movie
Starring: Brad Pitt, Damson Idris, Kerry Condon, Javier Bardem
Director: Joseph Kosinski
Rating: 4/5
SPEC%20SHEET%3A%20APPLE%20M3%20MACBOOK%20AIR%20(13%22)
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THE SPECS
2020 Toyota Corolla Hybrid LE
Engine: 1.8 litre combined with 16-volt electric motors
Transmission: Automatic with manual shifting mode
Power: 121hp
Torque: 142Nm
Price: Dh95,900
MATCH INFO
Europa League semi-final, second leg
Atletico Madrid (1) v Arsenal (1)
Where: Wanda Metropolitano
When: Thursday, May 3
Live: On BeIN Sports HD
The%20specs
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The specs: 2018 GMC Terrain
Price, base / as tested: Dh94,600 / Dh159,700
Engine: 2.0-litre turbocharged four-cylinder
Power: 252hp @ 5,500rpm
Torque: 353Nm @ 2,500rpm
Transmission: Nine-speed automatic
Fuel consumption, combined: 7.4L / 100km
Benefits of first-time home buyers' scheme
- Priority access to new homes from participating developers
- Discounts on sales price of off-plan units
- Flexible payment plans from developers
- Mortgages with better interest rates, faster approval times and reduced fees
- DLD registration fee can be paid through banks or credit cards at zero interest rates
TOURNAMENT INFO
Women’s World Twenty20 Qualifier
Jul 3- 14, in the Netherlands
The top two teams will qualify to play at the World T20 in the West Indies in November
UAE squad
Humaira Tasneem (captain), Chamani Seneviratne, Subha Srinivasan, Neha Sharma, Kavisha Kumari, Judit Cleetus, Chaya Mughal, Roopa Nagraj, Heena Hotchandani, Namita D’Souza, Ishani Senevirathne, Esha Oza, Nisha Ali, Udeni Kuruppuarachchi
Personalities on the Plate: The Lives and Minds of Animals We Eat
Barbara J King, University of Chicago Press
World Cup final
Who: France v Croatia
When: Sunday, July 15, 7pm (UAE)
TV: Game will be shown live on BeIN Sports for viewers in the Mena region
