A father shares how an Abu Dhabi campaign transformed his family’s future, explaining that the initiative went beyond charity and provided his daughter with a chance to survive and thrive.
Father Says Abu Dhabi Campaign Gave His Daughter a Second Chance at Life
Malya was only two months old when her father, Saeed Al-Junaibi, began to sense that something was not right. His baby daughter was experiencing tremors and was not meeting the usual developmental milestones for her age.
Following multiple medical examinations, doctors confirmed the family’s worst fear: Malya had spinal muscular atrophy (SMA), a rare genetic disorder that weakens muscles over time and can be fatal without timely treatment. While a highly effective gene therapy, Zolgensma, was available, its extremely high cost placed it beyond the family’s financial means.
“The hardest part was knowing there was a treatment that could help her, but we simply could not afford it,” Saeed said, describing the emotional toll as heartbreaking.
Hope arrived when Malya was accepted into Abu Dhabi’s Life Endowment campaign, a sustainable healthcare funding programme led by Awqaf Abu Dhabi in partnership with the Department of Health – Abu Dhabi. The initiative focuses on providing life-saving support to the emirate’s most vulnerable and critically ill patients.
Until then, everything felt uncertain
The Life Endowment campaign has now started distributing the first proceeds from its endowment investments, together with charitable contributions, to assist approximately 140 critical medical cases in its opening phase. Malya was among the children selected to receive support.
Saeed described the moment they learned that the cost of Malya’s treatment would be fully funded as unforgettable. “It was one of the most powerful and emotional experiences we have ever had,” he said.
Before that decision, the family lived with constant uncertainty. They understood the seriousness of the diagnosis and were aware that a treatment was available, yet the financial burden made it feel out of reach.
Saeed recalls cradling his daughter while feeling the pressure of time. “When we were informed that the support had been approved, it felt like help came just when we needed it most,” he said. “There were tears of joy, but also tears of relief—relief that we no longer had to wonder whether our daughter could be saved.”
Not long after, Malya was given the Zolgensma gene therapy, enabling doctors to proceed with a stable and uninterrupted care plan. “From that point on,” Saeed added, “our entire focus was on her treatment and recovery.”
No longer in survival mode
Before assistance was approved, the family’s everyday life was overshadowed by anxiety, financial strain and an ongoing sense of uncertainty. Saeed said each day was marked by fear and constant concern about what lay ahead.
Now, although Malya still needs regular medical check-ups and close observation, the emotional burden has significantly lifted. “We are no longer just trying to get through each day,” he said. “The overwhelming fear that once controlled our lives has eased.”
Above all, the family is finally able to think beyond the present moment.
“This support has transformed our outlook on the future,” Saeed explained. “We can focus on her growth, her physical progress and the possibility of a healthier, fuller life. For a parent, being able to plan with hope instead of dreading what comes next is life-changing.”
A burden no parent should carry
The Life Endowment approach marks a new way of financing healthcare assistance, turning donated funds into long-term, sustainable returns that can continue supporting patients well into the future. Under the supervision of the Department of Health, cases are carefully selected through a strict, evidence-based evaluation to ensure help reaches patients who require immediate treatment.
For Saeed, the value of the programme extends far beyond monetary support.
“What my daughter received was not an act of charity,” he said. “She was given the chance to receive life-saving care at a moment when any delay could have made a critical difference.”
He explained that the support allowed doctors to focus solely on medical necessity rather than cost. “It lifted a weight that no parent should ever be forced to carry on their own.”
Looking back, Saeed reflected on the wider meaning of the experience. “Family is at the heart of everything. When a child is supported, the whole family is supported,” he said.
Expressing his gratitude, he added: “I am truly thankful, and I hope more initiatives like the Life Endowment campaign continue to stand by families facing serious health challenges, reminding them they are not facing these struggles alone.”
Moment of Reassurance
One particular moment during Malya’s treatment has stayed with her father.
“When the doctors told us the gene therapy had been delivered successfully and that her body now had the ability to respond to the illness, everything changed,” he recalled.
Hearing the medical team speak with optimism about her condition brought a feeling the family had not experienced since the diagnosis — a sense of calm and confidence.
Even the smallest indications of improvement have meant the world to them.
“As a parent, you cling to every small sign,” he said. “Knowing she finally received the treatment she needed restored our hope and strengthened our faith in what the future could hold.”
