Inside the UAE fundraising effort that raised Dh10.6 million for a boy’s rare disease treatment

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A 10-year-old receives one of the world’s most expensive therapies following a fundraising campaign.

Dubai: For years, the mother of 10-year-old Iraqi boy Youssef Haider lived with the fear that her son’s condition was deteriorating faster than medical help could arrive.

That fear has now given way to hope after Youssef received what is considered one of the world’s most expensive therapeutic injections, marking a significant milestone in his treatment for Duchenne muscular dystrophy, a rare condition that progressively weakens the muscles and heart.The treatment became possible after a humanitarian campaign in the United Arab Emirates successfully raised Dh10.6 million in cooperation with Dar Al Ber Society, following a public appeal launched by Al Khaleej Newspaper in March under the headline: “Save Youssef… A race against time before his muscles and heart fail him.”

According to Al Khaleej, Youssef’s father, Haider Al Waeli, said his son received the injection after undergoing extensive medical examinations, laboratory tests, and treatment procedures.

He added that the United Arab Emirates covered the full cost of the treatment through a community-led fundraising campaign organised in collaboration with Dar Al Ber Society.

Youssef’s mother, speaking emotionally, said the United Arab Emirates had not only saved her child’s life but also given relief to an entire family that had spent years oscillating between hope and fear.

She said the symptoms began when Youssef was four years old, when he started showing signs of muscle weakness, frequent falls, and difficulty with movement, before doctors later diagnosed him with Duchenne muscular dystrophy.

Duchenne muscular dystrophy is considered one of the world’s most severe neuromuscular diseases, often requiring highly specialised and extremely expensive treatments aimed at slowing disease progression and improving quality of life.

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