A student residing in Dubai who suffers from a rare muscle-wasting disease has begun a novel treatment funded through a nationwide fundraising campaign that raised 10.6 million dirhams, and he now "feels stronger."

Yousef Al-Waeli, a 10-year-old boy from Iraq, has Duchenne Muscular Dystrophy; a genetic disorder for which there is currently no definitive cure. This disease affects mobility, respiratory function, and heart function, significantly reducing patients' life expectancy.

He was hospitalized in April at Al Jalila Children's Hospital in Dubai to undergo the necessary preliminary tests for a specialized gene therapy injection called Elevidys.

The drug Elevidys, which is approved by the U.S. Food and Drug Administration (FDA), is considered one of the most expensive medications in the world. It is administered via intravenous injection and delivers a type of protein that helps strengthen muscles and delays the progression of the disease; a condition that often requires patients to use a wheelchair by around age 12.

His father, Haidar Al-Waeli, told The National News:

“Yousef feels more powerful after two weeks of treatment. This treatment saved my son's life.”

He added:

“We are all very happy and grateful to the hospital for providing such amazing care, and we will forever be thankful to the UAE and everyone who helped us in this campaign.”

Yousef visits the hospital weekly for physiotherapy and steroid treatments.

His father continued:

“He feels strength returning to his muscles. Walking is still difficult for him, but we know that the recovery process will take several months.”

Haidar Al-Waeli, 38, also stated:

“My wife is very happy, and after months of suffering and sleepless nights beside Yousef, she can now sleep comfortably. The hospital staff are amazing. They have told us that there have been no side effects or problems for Yousef after receiving this treatment.”

Dr. Haitham Al-Bashir, head of the Neuroscience Center and Neuro-Rehabilitation Department at Al Jalila Hospital, said that Yousef will be placed in a comprehensive rehabilitation program tailored to his specific condition over the next three months.

He explained:

“Yousef began his treatment journey at the hospital in early April and underwent a series of medical evaluations and diagnostic tests to identify his special health needs and achieve the best possible outcomes for his treatment.”

This fundraising campaign gained widespread support after the Dar Al Ber charitable organization, one of the oldest charitable institutions in the UAE, stepped in to raise awareness about the family's difficult situation.

Thousands of citizens, residents, and philanthropists across the UAE came together to help Yousef's family reach the fundraising goal and provide this vital treatment opportunity for him.

Haidar Al-Waeli said that the people's response has had a profound and life-changing impact on his family's life.

He concluded:

“I will be forever grateful to the UAE and all the donors who saved my son's life. After years of fear and worry for my child's life, this event was like a miracle for us.”

Source: The National News