Iraqi Father's Desperate Plea: $2.9 Million Gene Therapy Needed to Save Son with Rare Muscle Disease

A heartbreaking scene unfolded as Iraqi father Saban Hassan, 42, watched his five-year-old son, Ali, collapse after a short walk. Despite the physical struggle, Ali's spirit shone through as he smiled and spoke of his dream to become a Formula One driver. This poignant moment underscores the severity of Ali's recent diagnosis in the UAE: Duchenne muscular dystrophy (DMD), a rare and aggressive genetic disorder causing progressive muscle weakness and degeneration.

The family, residing in Iraq, has been informed that gene therapy offers a potential treatment, but the staggering cost of Dh10.6 million ($2.9 million) is far beyond their financial reach. Compounding their distress, they have been told Ali may only have a year left to live if treatment doesn't commence soon.

Driven by a father's love, Mr Hassan has launched a fundraising campaign to save his son's life. An initial appeal in his homeland garnered some funds but fell drastically short of the required amount. "All doors are closed in front of me, I don’t know what to do," Mr Hassan shared with The National. "I made a donation drive in Iraq but I only managed to raise 2 per cent of the money."

Ali's health challenges first became apparent to his parents through observed difficulties with communication and behavior, including significant hyperactivity. Ali now struggles to climb stairs and experiences general difficulty walking. After approximately two years of neurological evaluations, more pronounced symptoms emerged, including trouble standing up from a seated position and increasing difficulty with walking.

A genetic test conducted in August at Al Jalila Children’s Hospital in Dubai confirmed Ali's diagnosis of DMD. The family was devastated by the news, which was further compounded in early August this year by the revelation of the treatment's exorbitant cost. The immense sum left the family in shock, struggling to comprehend how they could possibly afford the gene therapy.

"He is my eldest son and I have a one-year-old daughter," Mr Hassan stated, his voice heavy with emotion. "Watching Ali dying in front of me – knowing there is treatment but it's impossible to get – is shattering my heart and his mother's every day." Selling their home in Iraq would barely make a dent in the required funds, as Mr Hassan explained, "Even if I sold my house in Iraq to pay the treatment, I will cover only 10 per cent of the cost."

Unyielding in his determination, Mr Hassan began approaching charities, Iraqi officials, and prominent individuals for assistance. However, his appeals were largely met with rejection, with some citing the sheer magnitude of the sum as insurmountable. He then turned his focus to the UAE, where the treatment is accessible, and explored options further afield.

"I hope my voice reaches the people around the world to help me raise the funds for the treatment," he pleaded. "I hope the UAE’s generosity will reach my son, Ali, and save his life."

This situation echoes previous instances of significant generosity in the UAE. In August, The National reported on Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, covering the medical treatment costs for a Jordanian toddler with spinal muscular atrophy. Similarly, in March 2021, Sheikh Mohammed funded the Dh8 million ($762,300) treatment for Iraqi toddler Laveen Jabbar Al Kutyashi. In July 2025, the Dubai Ruler also pledged to cover the Dh7 million treatment for a Syrian girl with SMA and previously paid for the treatment of Fatima Ahmed Hassan, a 15-year-old diagnosed with sarcoma.