Sheikh Mohammed sponsors SMA treatment for Jordanian toddler Katia
By Catherine Smith GST 2 min read
A 16-month-old Jordanian girl, Katia Abu Al Saud, has begun treatment for spinal muscular atrophy at Al Jalila Children’s Hospital in Dubai after Sheikh Mohammed bin Rashid Al Maktoum agreed to cover the full cost of her care. Her mother, Nour Roudnahal, said the medical team had completed Katia’s initial examinations and was preparing the next steps in her treatment.
The two travelled to Dubai from Queen Alia International Airport in Amman, according to Gulf News. The Dubai Media Office announced on 20 August that Sheikh Mohammed would fully fund Katia’s treatment at the hospital.
‘By the grace of God and Sheikh Mohammed, we are here today at Al Jalila Children’s Hospital,’ Nour said in a video published by the Dubai Media Office. ‘The entire medical team deserves our thanks. They have not fallen short with us. We carried out Katia’s initial examinations and, based on them, God willing, we will take the next steps.’
A race against time for Katia Abu Al Saud’s SMA treatment
Katia’s parents first noticed she was not developing normally at six months old, when her movement was not progressing as expected. She was later diagnosed with spinal muscular atrophy, a genetic condition affecting muscle movement. Her family said the treatment was not available in Jordan.
The expected therapy is Zolgensma (onasemnogene abeparvovec-xioi), a one-time gene-therapy infusion approved by the US Food and Drug Administration for children under two with SMA. The family said the total cost of treatment could reach $2.4 million. The drug’s average wholesale price in the United States is $2.125 million per lifetime infusion, according to Cure SMA; the higher figure cited by the family is likely to reflect total care costs in Dubai.
Crucially, the gene therapy must be administered before a child turns two. With that window closing, the family launched an online fundraising campaign, collecting donations into a US account. The amount raised fell short of what was needed.
‘We were in a race and a struggle with time to save Katia before it was too late,’ Nour said. ‘Her illness is more difficult than anyone could imagine because every second makes a difference.’
The family’s appeal eventually reached Sheikh Mohammed. ‘We appealed to Sheikh Mohammed, and praise be to God, he answered the call,’ Nour said. ‘It was a very happy surprise as if a burden had been lifted from our chests. We were able to rest and breathe.’
Al Jalila’s experience with SMA
Al Jalila Children’s Hospital, located in Al Jaddaf, is the UAE’s only standalone children’s hospital and treats patients from birth to 18 years of age. The facility has logged more than 100 SMA treatments, as detailed on its SMA treatment milestone page.
The hospital was also the first in the UAE to administer Zolgensma, doing so in November 2020 when doctors treated a five-month-old girl with SMA, according to a Dubai Media Office announcement at the time.
Nour said the family remained hopeful. ‘We place our trust in God and, God willing, everything will become easier. We will all celebrate her complete recovery together.’
Katia’s next steps in care will be determined by the results of her initial examinations, which the medical team completed on her arrival.
