'We were heard': Father thanks Dubai Ruler for Dh7 million that saved child's life
At 9.05am, doctors along with the nurses walked in carrying a small, sealed red box that contains the life-saving gene therapy medicine and could change Yaqeen's future forever. Looking at it, Yaqeen's mother stood frozen as she saw the medicine being brought in.
Her eyes followed every movement. And then, she smiled, the kind of smile that only a mother who's lived through months of fear and sleepless nights could give. Her eyes rose up, but she didn't cry. Instead, she took a deep breath of relief, of hope, and of gratitude.
'Today, my daughter gets a second chance at life,' she said softly, almost as if trying to convince herself that this wasn't just another dream.
A few weeks ago, this moment felt impossibly far. The family, Syrian nationals residing in the UAE, had launched an emotional plea on social media to save their daughter who was diagnosed with spinal muscular atrophy (SMA), a rare, serious, and life-threatening genetic disorder and the treatment costs Dh7 million.
But then came a miracle — Sheikh Mohammed bin Rashid Al Maktoum, Vice-President and Prime Minister of the UAE and Ruler of Dubai, responded to their plea. His office reached out directly to the family and informed them that he would cover the full cost of the gene therapy, giving Yaqeen the lifeline she urgently needed.
'I still can't believe it,' said Ibrahim Kaneker, Yaqeen's father. 'When I got the call, I broke down. I didn't know what to say. I never imagined our cry for help would reach Sheikh Mohammed himself. May God bless him and give him abundantly, he saved our daughter's life.'
'She just stopped moving her legs'
Yaqeen was six months old when her parents noticed something wasn't right. 'She had just started rolling over,' said her mother. 'But then, she stopped. She wasn't kicking her legs anymore. She was quiet. We thought maybe she was tired. But then the days went by... and nothing changed.'
After multiple visits to the doctors and several rounds of testing, the family was given the heartbreaking diagnosis of spinal muscular atrophy, Type 2. It is a genetic condition that affects motor neurons in the spinal cord and brainstem, gradually weakening the muscles that control movement, breathing, and swallowing.
'We were shattered,' said Ibrahim. 'She was so small… how could she already have something so serious? As a father, you want to protect your child. But how do you protect her from something inside her own body?'
Arrival of treatment
Dr Haitham El Bashir, neuro-rehabilitation specialist and head of the gene therapy programme at Al Jalila Children's Hospital, oversaw Yaqeen's treatment. 'She has been diagnosed with SMA, and her symptoms began at around six months,' he said. 'We saw her a few weeks ago, ran all the necessary tests and screening, and confirmed she is eligible for gene therapy.'
The therapy, which costs millions, is a one-time infusion that works by replacing the faulty gene responsible for SMA.
'Today is a big day for her,' said Dr El Bashir. 'The infusion will take about an hour, and then she will stay with us for 24 hours for observation. After that, she will visit us weekly for the next three months so we can monitor her progress. I am very optimistic. She is already showing signs of strength, and with this therapy, she'll have a real chance.'
Yaqeen's mother did not speak much. She didn't need to and her expressions said it all. 'This moment, I will remember forever. When I saw the medicine being brought in… I can't describe the feeling. It was like the weight of the world was lifted from my chest. My daughter's smile tells me everything will be okay.'
A nation that cares
As the family shared their story, there was one emotion that was repeated again and again: gratitude. Gratitude to the UAE, to the hospital staff, to strangers who shared their posts and prayed for them. And most of all, to Sheikh Mohammed.
'He didn't know us. But he helped us like we were his own,' said Ibrahim. My daughter has a chance because we are here, because we were heard.'
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