Public raises Dh6.6m to buy ‘miracle drug’ for boy in Dubai who struggles to breathe
The UAE public has raised Dh6.6 million ($1.8 million) in less than a week for a “miracle drug” to transform the life of a boy with spinal muscular atrophy who fights for every breath.
The UAE’s International Charity Organisation made an appeal on Friday to help 19-month-old Muhib and, in four days, about Dh4 million flowed in.
More than Dh2 million more has been pledged since then.
“I’m overwhelmed. I will be forever grateful to the UAE and its good people,” said Abdulhakeem Abdullah, 37, the boy’s father. Muhib will begin gene therapy at Al Jalila Children’s Specialty Hospital in Dubai within the next two weeks, doctors have said.
He will be given an injection of Zolgensma, a drug that costs Dh8 million for a onetime shot.
Muhib’s condition weakens his muscles and he is struggling to breathe.
The drug does not cure the condition but it significantly improves quality of life, in many cases allowing the recipient to breathe unassisted and sit up unaided.
Considering the financial situation of his family, the hospital bore part of the cost, cutting it to Dh6.6 million. Mr Abdullah, who is an accountant and earns Dh6,000 a month, said it would be impossible to pay a fraction of the cost.
The family lives in a studio apartment in Sharjah, which costs Dh10,000 a year to rent.
“We were desperate. We reached out to different charities and knocked on so many doors,” he said.
“Some charities promised to support with Dh2.6 million, but the International Charity Organisation collected Dh4 million in just four days.
“Today, the charity called me to say the donation process was completed successfully.
“The doctors said Muhib should take the injection before he turns two and we just had a few months left.
“My wife and I are thrilled that in a few days our son will get the treatment and live with the support of people in the UAE and ‘Eyal Zayed’ [Zayed’s sons].”
The organisation in Ajman took up the cause last week.
“We received a request from Muhib’s family to help them due to their financial condition. We studied the file and decided to raise Dh4 million,” a spokesman said.
The group receives “social, humanitarian and health cases
and study them before appealing for donations or providing aid”, the spokesman said.
The organisation posted a video of the child in hospital with his mother at his bedside and asked the public for help to pay his medical expenses.
“He must take the injection as soon as possible, without it he won’t survive. To all the people in the UAE, please help me save my son Muhib,” his mother said.
Muhib was born in May 2021, and in January last year he was taken to Al Jalila hospital to be treated for pneumonia.
He was later admitted to the intensive care unit.
In March, he was put on a ventilator and doctors told his parents that he had spinal muscular atrophy.
“The money will be deposited in the hospital’s account in a couple of dayso,” Mr Abdullah said. “I can’t wait for the day when my son fully recovers and plays with his older brother.”
Spinal muscular atrophy affects one in 10,000 children and can limit the ability to crawl, walk, sit up and control head movements.
Children as young as two months can display signs of the most common type of the condition. It is a hereditary disease caused by a missing or faulty gene that the body requires to make a protein essential for motor neuron cell survival.
Without sufficient levels of the protein, the motor neurons – nerve cells in the brainstem and spinal cord – die, leading to muscle weakness.
There are four types of the condition. Type 1 is the most severe and many children with it do not live past the age of two. Muhib has Type 1 disorder.
Children with Type 2 may sit without support, but cannot walk on their own.
Type 3 is a milder form of the disease and resembles muscular dystrophy. Children are usually able to walk with difficulty and some may need to use a wheelchair.
They usually have a normal life expectancy.
Type 4 is rare. It starts in young adulthood and results in mild motor impairment.
The treatment that Muhib will receive is a one-time infusion that transfers the missing gene directly into his cells.