The family of an Egyptian toddler diagnosed with spinal muscular atrophy are celebrating the success of a campaign that raised 40 million pounds ($2.13 million) in less than a week to pay for a single-dose treatment to save her life.
Roqaya’s family were told by doctors that their daughter needed to receive a dose of Zolgensma, the world’s most expensive prescription drug, developed by pharmaceutical giant Novartis, before her second birthday on July 13.
Roqaya began to show symptoms of SMA when she was 6 months old, when she began to find it difficult to move or crawl.
The disease is caused by the absence or mutation of a gene called SMN1, which weakens the muscles of those suffering from it to varying degrees and at different speeds, according to the type of SMA they have.
Roqaya was diagnosed with the most severe of four types of spinal muscular atrophy that accounts for about 60 per cent of cases. Patients with this type develop symptoms within the first six months of life and typically die before their second birthday.
Her parents said it took doctors a long time to properly diagnose their daughter’s illness. They were told earlier this year that she would need to receive a dose of Zolgensma, which received FDA approval in 2019 and needs to be administered before a child’s second birthday to have optimal results.
Upon learning the high cost of the drug, Roqaya’s family and their friends and neighbours began to share her story on social media and appeal for donations.
Her story has been one of the most followed on Egyptian social media channels in recent weeks, with many celebrities, businessmen and athletes asking their fans to donate.
Thousands of people answered the call, with 10 million pounds raised in the first three days of the campaign and 40 million in just one week.
A group of students from Cairo University cancelled their graduation party and donated the funds to Roqaya’s cause, local media reported.
The fund was managed by the Social Solidarity Ministry, which also opened a dedicated donations channel that allowed people to contribute when paying for their purchases at supermarkets and other stores.
Roqaya's family held a celebration in their home town of Alexandria on Friday as the donations reached 40 million pounds.
Her parents thanked all those who donated and helped raise awareness of Roqaya's plight, including the actors Mohamed Heneidy and Ahmed El Awady.
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