A Dubai schoolboy with a rare genetic disorder has issued an emotional plea to the public to “save my life” as his family race against time to fund a vital Dh10 million treatment.
Yousef Hayder Al Waaeli, 10, is living with Duchenne muscular dystrophy, a muscle-wasting condition for which there is no cure. It affects mobility, breathing and heart function and greatly reduces life expectancy.
Yousef and his family, who are from Iraq, have already received remarkable support, with Dh5.6 million of donations gathered to finance a groundbreaking one-dose treatment called Elevidys.
The drug – which has been approved by the US Food and Drug Administration – is administered intravenously and delivers a form of protein that serves to strengthen muscles and delay the progression of a disorder that often leaves patients needing a wheelchair by the age of 12.
The treatment, one of the world's most expensive, is available at Al Jalila Children’s Hospital.
“I’m suffering from Duchenne muscular dystrophy,” Yousef told The National from his home in Dubai. “I want people to save my life as the treatment is very expensive. My dream is to play like any other normal child.”
His father, Hayder Al Waaeli, 38, said the first signs appeared when Yousef was just four years old.
“He started having shaking in his hands and legs, and we knew something was wrong,” he said. “Now his condition has worsened rapidly, he can barely walk.”
Doctors have given the family a narrow window to act.
“They told us we only have a couple of months to take the injection, otherwise it will be useless,” Mr Al Waaeli said.
“If we miss this chance, he could become completely disabled, and later his heart and breathing muscles may stop.”
The treatment costs Dh10,654,000, far beyond what the family can afford.
Yousef is being monitored by specialists at Al Jalila Children’s Hospital, but without the gene therapy, his options are limited.
In a bid to help their son, the family turned to the community for help. His mother launched appeals on social media, drawing support from Emiratis and residents alike and eventually connecting them with Dar Al Ber Society, one of the country's oldest charitable organisations.
“We sold most of our valuables and collected money from family and friends,” Mr Al Waaeli said.
“Dar Al Ber launched a donation drive two months ago, and it was going well. They even made a live donation drive to secure the money.”
However, the campaign has recently slowed. “The donations stopped a bit due to regional tensions, but we still need around Dh4 million,” he added.
“We are asking people to help us secure the remaining amount. More than 60 per cent of the money is secured but we hope more people help us to pay the rest.”
For Yousef’s mother, Jehan Ali, the situation is heartbreaking.
“It is very hard for parents to watch their son suffering, barely able to walk, and not be able to do anything,” she said tearfully.
“It’s painful to know there is a treatment that could save my son, but we can’t access it because of money. He can't join his school any more. I devoted my time for him.”
Dr Hisham Al Zahrani, manager of the Zakat Department at Dar Al Ber Society, said it will do all it can to assist Yousef, but it needs more community support.
“We are proud to support initiatives that bring hope to children like Yousef. We remain committed to supporting families navigating complex medical challenges.
“Yousef’s case reflects our ongoing efforts to make specialised treatment more accessible through community support, making a meaningful difference in young lives,” Dr Al Zahrani said.
People can pledge donations for Yousef on the Dar Al Ber Society website, using this link.
