An Iraqi father watched on helplessly as his five-year-old son collapsed after walking for a few metres, only for the boy to look up, smiling, before talking of his dream of becoming a Formula One driver.
Such moments are heartbreaking for Saban Hassan, 42, as his son, Ali, was recently diagnosed in the UAE with Duchenne muscular dystrophy (DMD), a rare and aggressive genetic disorder that causes progressive muscle weakness and degeneration.
The family, who live in Iraq, have been told gene therapy could be an option but the quoted a price of Dh10.6 million ($2.9 million) is far beyond their means. They have also been told Ali may have only a year left to live if treatment does not start soon.
This has led Mr Hassan to launch a fund-raising drive to save the life of his little boy and he is pleading for help to reach the target. The initial appeal in his homeland raised some money but fell significantly short of the amount needed.
“All doors are closed in front of me, I don’t know what to do,” the worried father told The National. “I made a donation drive in Iraq but I only managed to raise 2 per cent of the money.”
Ali’s difficulties first became apparent when his parents noticed problems with communication and behaviour, including marked hyperactivity.
He underwent neurological evaluations for about two years before more symptoms emerged.
He began struggling to climb stairs and had difficulty standing up after sitting on the floor. Walking then became increasingly difficult.
A genetic test from a sample sent to Al Jalila Children’s Hospital in Dubai in August confirmed that Ali had DMD.
Mr Hassan said the family were devastated when they learnt of the diagnosis, which was compounded at the start of August this year when they found out how much the treatment would cost.
The news left the family struggling to comprehend how they would find such an enormous sum. Mr Hassan said they sat in silence, looking at their son and wondering how they could afford to provide the gene therapy treatment.
“He is my eldest son and I have a one-year-old daughter,” he said. “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 the family home would make little difference to the amount required, the father said.
“Even if I sold my house in Iraq to pay the treatment, I will cover only 10 per cent of the cost,” he said.
Determined not to give up, however, he began approaching charities, officials in Iraq and prominent individuals, hoping someone would be able to help.
But his appeals were met with rejection, with some telling him the amount was simply too large for anyone to provide. He then turned his attention to the UAE, where the treatment is available, and to places further afield.
“I hope my voice reaches the people around the world to help me raise the funds for the treatment,” he said. “I hope the UAE’s generosity will reach my son, Ali, and save his life.”
History of helping
In August, The National reported how a Jordanian mother's plea to save her toddler was answered by Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, who covered the cost of medical treatment for her daughter.
It was confirmed Katia Abu Al Saud, who was 16 months old at the time, would have treatment for spinal muscular atrophy, another rare genetic disorder, at Al Jalila Children's Hospital.
Katia's mother, Nour Roudnahal, appealed for assistance with the $2.4 million treatment, which the family could not afford, and her request gained attention on social media, before Sheikh Mohammed duly obliged.
In March 2021, Sheikh Mohammed covered the Dh8 million ($762,300) treatment for Iraqi toddler Laveen Jabbar Al Kutyashi, who received the drug Zolgensma, a one-time prescription gene-replacement therapy, at Al Jalila.
In July 2025, the Dubai Ruler pledged to pay the Dh7 million treatment costs for a Syrian girl with SMA after hearing her father's public appeal.
He also paid for treatment for 15-year-old Fatima Ahmed Hassan, who was diagnosed with sarcoma. After several months of care, she was declared free of cancer.