emirates7 - For the Al-Junaibi family, hope came with heartbreak; an effective gene therapy existed, but they could not afford it
Malya was just two months old when her father, Saeed Al-Junaibi, first noticed something was wrong with his newborn daughter. “She began shaking and was not developing like other children her age,” he recalled.
After a series of medical tests, doctors delivered the diagnosis every parent fears: spinal muscular atrophy (SMA), a rare and severe genetic neuromuscular condition that causes progressive muscle weakness and can be life-threatening if left untreated.
For the Al-Junaibi family, the diagnosis came with another crushing reality. An effective treatment existed — a specialised gene therapy known as Zolgensma—but the cost was far beyond their reach.
“Knowing that an effective treatment existed but was financially out of reach was emotionally overwhelming,” Saeed said. “It was devastating.”
That changed when Malya’s case was approved under Abu Dhabi’s Life Endowment campaign, a sustainable financing initiative led by Awqaf Abu Dhabi in collaboration with the Department of Health–Abu Dhabi (DoH), designed to support the emirate’s most critical and vulnerable medical cases.
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
'Until then, everything felt uncertain'
The Life Endowment campaign recently began deploying the first returns generated from its endowment assets, alongside donations, to support around 140 urgent medical cases in its initial phase. Malya was one of them.
“When we received confirmation that Malya’s treatment would be covered, it was one of the most emotional moments of our lives,” her father said.
“Until then, everything felt uncertain. We had a diagnosis, we knew the treatment existed, but we also knew the cost was beyond our reach.”
He remembers holding his daughter and feeling time slipping away.
“When we were told the funding had been approved, it felt like help arrived at the exact moment we needed it most. There were tears — not only from happiness, but also from relief. Relief that we no longer had to question whether we could save our child.”
Soon after, Malya received the Zolgensma injection, allowing doctors to move forward with a clear and uninterrupted treatment plan. “From that moment, the focus shifted entirely to her care and recovery,” Saeed said.
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
No longer in survival mode
Before receiving support, daily life for the family was consumed by fear, financial pressure and constant uncertainty. “Every day was filled with worry about what might happen next,” Saeed said.
Today, while Malya continues to require careful follow-ups and monitoring, the emotional weight has eased. “We are no longer living in survival mode,” he said. “The fear that once dominated our thoughts has softened.”
Most importantly, the family can now look ahead.
“This support has completely changed how we see the future,” he added. “We can think about her development, her strength, and her chance to experience a better quality of life. Being able to plan ahead instead of fearing tomorrow is a profound change for any parent.”
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
Moment of reassurance
One moment during Malya’s treatment remains etched in her father’s memory.
“When the doctors explained that the gene therapy had been successfully administered and that her body now had a chance to fight the disease, that changed everything,” he said.
“Hearing the medical team speak with confidence about her progress gave us something we had not felt since her diagnosis: reassurance.”
Even small signs of response have carried immense meaning.
“As a parent, you hold onto small moments,” he said. “Knowing she finally had access to the care she needed gave us renewed belief in her future.”
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
'A burden no parent should carry’
The Life Endowment model represents a shift in how healthcare support is funded, transforming charitable capital into sustainable income streams that can support patients over the long term. Cases are identified through a rigorous, evidence-based process overseen by DoH, ensuring funds reach those whose treatment cannot be delayed.
For Saeed, the impact goes far beyond financial assistance.
“What they gave my daughter was not charity,” he said. “They gave her access to life-saving treatment at a time when delay could have changed everything.”
“Because of their support, medical decisions were made based on need, not affordability. They removed a burden that no parent should have to carry alone.”
Reflecting on the experience, he added, “Family is the foundation of life. When you support a child, you support an entire family.”
“I am deeply grateful,” he said, “and I hope to see more initiatives like the Life Endowment campaign that help families facing serious medical challenges feel supported — and not alone.”
Malya was just two months old when her father, Saeed Al-Junaibi, first noticed something was wrong with his newborn daughter. “She began shaking and was not developing like other children her age,” he recalled.
After a series of medical tests, doctors delivered the diagnosis every parent fears: spinal muscular atrophy (SMA), a rare and severe genetic neuromuscular condition that causes progressive muscle weakness and can be life-threatening if left untreated.
For the Al-Junaibi family, the diagnosis came with another crushing reality. An effective treatment existed — a specialised gene therapy known as Zolgensma—but the cost was far beyond their reach.
“Knowing that an effective treatment existed but was financially out of reach was emotionally overwhelming,” Saeed said. “It was devastating.”
That changed when Malya’s case was approved under Abu Dhabi’s Life Endowment campaign, a sustainable financing initiative led by Awqaf Abu Dhabi in collaboration with the Department of Health–Abu Dhabi (DoH), designed to support the emirate’s most critical and vulnerable medical cases.
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
'Until then, everything felt uncertain'
The Life Endowment campaign recently began deploying the first returns generated from its endowment assets, alongside donations, to support around 140 urgent medical cases in its initial phase. Malya was one of them.
“When we received confirmation that Malya’s treatment would be covered, it was one of the most emotional moments of our lives,” her father said.
“Until then, everything felt uncertain. We had a diagnosis, we knew the treatment existed, but we also knew the cost was beyond our reach.”
He remembers holding his daughter and feeling time slipping away.
“When we were told the funding had been approved, it felt like help arrived at the exact moment we needed it most. There were tears — not only from happiness, but also from relief. Relief that we no longer had to question whether we could save our child.”
Soon after, Malya received the Zolgensma injection, allowing doctors to move forward with a clear and uninterrupted treatment plan. “From that moment, the focus shifted entirely to her care and recovery,” Saeed said.
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
No longer in survival mode
Before receiving support, daily life for the family was consumed by fear, financial pressure and constant uncertainty. “Every day was filled with worry about what might happen next,” Saeed said.
Today, while Malya continues to require careful follow-ups and monitoring, the emotional weight has eased. “We are no longer living in survival mode,” he said. “The fear that once dominated our thoughts has softened.”
Most importantly, the family can now look ahead.
“This support has completely changed how we see the future,” he added. “We can think about her development, her strength, and her chance to experience a better quality of life. Being able to plan ahead instead of fearing tomorrow is a profound change for any parent.”
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
Moment of reassurance
One moment during Malya’s treatment remains etched in her father’s memory.
“When the doctors explained that the gene therapy had been successfully administered and that her body now had a chance to fight the disease, that changed everything,” he said.
“Hearing the medical team speak with confidence about her progress gave us something we had not felt since her diagnosis: reassurance.”
Even small signs of response have carried immense meaning.
“As a parent, you hold onto small moments,” he said. “Knowing she finally had access to the care she needed gave us renewed belief in her future.”
'It was not charity': Father says Abu Dhabi campaign gave daughter new chance at life
'A burden no parent should carry’
The Life Endowment model represents a shift in how healthcare support is funded, transforming charitable capital into sustainable income streams that can support patients over the long term. Cases are identified through a rigorous, evidence-based process overseen by DoH, ensuring funds reach those whose treatment cannot be delayed.
For Saeed, the impact goes far beyond financial assistance.
“What they gave my daughter was not charity,” he said. “They gave her access to life-saving treatment at a time when delay could have changed everything.”
“Because of their support, medical decisions were made based on need, not affordability. They removed a burden that no parent should have to carry alone.”
Reflecting on the experience, he added, “Family is the foundation of life. When you support a child, you support an entire family.”
“I am deeply grateful,” he said, “and I hope to see more initiatives like the Life Endowment campaign that help families facing serious medical challenges feel supported — and not alone.”