Two families in the UAE whose young children are battling a devastating disorder are seeking support to raise the Dh8 million for life-saving treatment.
Hayat Mabda, 40, from Ajman, is facing a race against time to help her seven-month-old son Saif, who was recently diagnosed with spinal muscular atrophy.
The Syrian parents of 10-month-old Zain Mohamed Bazerbashi, in Abu Dhabi, are in the grips of their own fight to help their son overcome the debilitating condition.
Both have type 1, the most severe form of the rare genetic disease, which affects about one in 10,000 children and causes a rapid loss of motor neurones, leading to problems with breathing, swallowing and overall movement.
The most effective treatment, Zolgensma, is also the world’s most expensive drug, costing Dh8m for the one-time infusion.
Both families are exploring ways to secure the crucial funds.
'My child's life depends on treatment'
“Saif is my first baby following three miscarriages since 2017. When he was born I looked at him and felt like I held the world,” said Ms Mabda.
"My child's life depends on this medication. The doctors have said that if treatment is not given before Saif’s one-year birthday, his condition will deteriorate," the mother said.
Saif was diagnosed with SMA at six months old but his mother had spotted warning signs earlier.
“We went to Al Qasimi hospital in Sharjah after I noticed he wasn’t able to control his movements or hold his head up despite being around five months old,” she said.
Doctors in Sharjah and Dubai both confirmed he suffered from the degenerative disease.
They told Ms Mabda she must be careful when carrying or bathing him.
“I have to support his whole body to avoid any injuries since he can't control his movement,” she said.
Even when seated in his reclining chair, Saif’s mother has to support his head with her hands.
His mother had to leave her job at a beauty salon after giving birth to care for him. His father works at a private company.
“We can barely make ends meet with my husband’s salary. We can pay regular living costs but certainly not for his medication,” said Ms Mabda.
Nearly three weeks ago, Saif faced difficulty breathing and was taken to the emergency unit at Al Qasimi hospital.
“We were told he needs medical equipment to help him breath and to clean his chest from mucus. They cost around Dh17,000 we don’t have.”
Families try to maintain hope
Duha Almasri said her son Zain was diagnosed with the same life-threatening disease by doctors in Syria in June.
“When we returned, doctors in the UAE, confirmed the diagnosis,” she said.
“Doctors said the sooner he receives the treatment the better.”
His parents had to call an ambulance last month when Zain stopped breathing.
“He was taken to Tawam hospital where doctors are using a tube to help him breath since September 10,” said the stay-at-home mother.
Zain's father has been living in the UAE for 15 years and works at a fabric store.
The couple have two other children, aged five and three.
Both families have approached approved charities in the UAE to find out what assistance is available.
How does the treatment work and why is it so expensive?
Zolgensma is the only therapy designed to directly address the genetic root cause of the condition. It does this by replacing the function of the missing or nonworking gene, which is critical in making a protein essential to motor neurone cell survival.
It is extremely effective, but hugely expensive because its market is very small and it required a lot of research to develop, Dr Sushil Garg, a consultant neurologist at NMC Royal Hospital in Dubai, told The National.
“These therapies are extraordinarily expensive as it is first of its kind gene modifying therapy, approved for rare neuromuscular disorders,” said Dr Garg.
“Any medicine which is for gene modifying or work on [the] immune system has to undergo a lot of research and trials and approval processes, hence is pretty expensive.”
The specs: Macan Turbo
Engine: Dual synchronous electric motors
Power: 639hp
Torque: 1,130Nm
Transmission: Single-speed automatic
Touring range: 591km
Price: From Dh412,500
On sale: Deliveries start in October
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The line up
Friday: Giggs, Sho Madjozi and Masego
Saturday: Nas, Lion Bbae, Roxanne Shante and DaniLeigh
Sole DXB runs from December 6 to 8 at Dubai Design District. Weekend pass is Dh295 while a one day pass is Dh195. Tickets are available from www.soledxb.com
More from Neighbourhood Watch:
The Voice of Hind Rajab
Starring: Saja Kilani, Clara Khoury, Motaz Malhees
Director: Kaouther Ben Hania
Rating: 4/5
The biog:
Favourite book: The Leader Who Had No Title by Robin Sharma
Pet Peeve: Racism
Proudest moment: Graduating from Sorbonne
What puts her off: Dishonesty in all its forms
Happiest period in her life: The beginning of her 30s
Favourite movie: "I have two. The Pursuit of Happiness and Homeless to Harvard"
Role model: Everyone. A child can be my role model
Slogan: The queen of peace, love and positive energy
The specs
The specs: 2019 Audi Q8
Price, base: Dh315,000
Engine: 3.0-litre turbocharged V6
Gearbox: Eight-speed automatic
Power: 340hp @ 3,500rpm
Torque: 500Nm @ 2,250rpm
Fuel economy, combined: 6.7L / 100km
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.
UAE v Gibraltar
What: International friendly
When: 7pm kick off
Where: Rugby Park, Dubai Sports City
Admission: Free
Online: The match will be broadcast live on Dubai Exiles’ Facebook page
UAE squad: Lucas Waddington (Dubai Exiles), Gio Fourie (Exiles), Craig Nutt (Abu Dhabi Harlequins), Phil Brady (Harlequins), Daniel Perry (Dubai Hurricanes), Esekaia Dranibota (Harlequins), Matt Mills (Exiles), Jaen Botes (Exiles), Kristian Stinson (Exiles), Murray Reason (Abu Dhabi Saracens), Dave Knight (Hurricanes), Ross Samson (Jebel Ali Dragons), DuRandt Gerber (Exiles), Saki Naisau (Dragons), Andrew Powell (Hurricanes), Emosi Vacanau (Harlequins), Niko Volavola (Dragons), Matt Richards (Dragons), Luke Stevenson (Harlequins), Josh Ives (Dubai Sports City Eagles), Sean Stevens (Saracens), Thinus Steyn (Exiles)
What vitamins do we know are beneficial for living in the UAE
Vitamin D: Highly relevant in the UAE due to limited sun exposure; supports bone health, immunity and mood.
Vitamin B12: Important for nerve health and energy production, especially for vegetarians, vegans and individuals with absorption issues.
Iron: Useful only when deficiency or anaemia is confirmed; helps reduce fatigue and support immunity.
Omega-3 (EPA/DHA): Supports heart health and reduces inflammation, especially for those who consume little fish.
Movie: Saheb, Biwi aur Gangster 3
Producer: JAR Films
Director: Tigmanshu Dhulia
Cast: Sanjay Dutt, Jimmy Sheirgill, Mahie Gill, Chitrangda Singh, Kabir Bedi
Rating: 3 star
Four tips to secure IoT networks
Mohammed Abukhater, vice president at FireEye in the Middle East, said:
- Keep device software up-to-date. Most come with basic operating system, so users should ensure that they always have the latest version
- Besides a strong password, use two-step authentication. There should be a second log-in step like adding a code sent to your mobile number
- Usually smart devices come with many unnecessary features. Users should lock those features that are not required or used frequently
- Always create a different guest network for visitors
Our legal columnist
Name: Yousef Al Bahar
Advocate at Al Bahar & Associate Advocates and Legal Consultants, established in 1994
Education: Mr Al Bahar was born in 1979 and graduated in 2008 from the Judicial Institute. He took after his father, who was one of the first Emirati lawyers
