A Dubai schoolboy living with a rare muscle-wasting condition is already “feeling stronger” after beginning pioneering treatment funded by a Dh10.6 million nationwide donation campaign.
Yousef Hayder Al Waaeli, 10, from Iraq, has Duchenne muscular dystrophy, a genetic disorder for which there is no cure. The condition affects mobility, breathing and heart function and greatly reduces life expectancy.
He was admitted to Al Jalila Children’s Hospital in Dubai in April to begin preparatory tests for a specialised gene-therapy injection called Elevidys.
The medicine – which has been approved by the US Food and Drug Administration and is one of the most expensive in the world – is administered intravenously and delivers a form of protein that helps to strengthen muscles and to delay the progression of a disorder that often leaves patients needing a wheelchair by the age of 12.
“Yousef feels stronger after two weeks of treatment. That treatment saved the life of my son,” his father, Hayder Al Waaeli, told The National.
“We are all thrilled and thankful to the hospital for the amazing care they provide and will be forever thankful to the UAE and anyone who helped us in the campaign.”
Every week, Yousef goes to the hospital for physiotherapy and steroid treatment. “He feels the power in his muscles again. It is still difficult for him to walk but we know it will take months to recover,” Mr Al Waaeli, 38, added.
“My wife is super happy and she can sleep properly after months of suffering and sleepless nights beside Yousef. The hospital staff are amazing. They told us there have been no complications after getting the therapy.”
Dr Haitham Elbashir, head of the Neurosciences Centre of Excellence and the neurorehabilitation department at Al Jalila, said Yousef will “undergo a comprehensive rehabilitation programme over the next three months as part of a personalised care plan tailored to his condition”.
“Yousef began his treatment journey at the hospital in early April, undergoing a series of medical assessments and diagnostic evaluations to address his specific health needs and support the best possible outcomes.”
The fund-raising campaign received a huge outpouring of support after Dar Al Ber Society, one of the UAE’s oldest charitable organisations, stepped in to raise awareness of the family’s plight.
Thousands of citizens, residents and donors from Iraq came together to help the family reach their fundraising target and provide Yousef with a crucial lifeline.
Mr Al Waaeli said he was deeply grateful for the response, describing it as life-changing for his family.
“I will be forever thankful to the UAE and all donors who saved the life of my son. It was a miracle after years of fear for my son’s life,” he said.