In three days, Egyptians collect $2M for one-dose treatment to save child with SMA

In only three days, more than 43 million Egyptian pounds were collected to save the life of a little Egyptian girl who is in urgent need of a $2 million injection for spinal muscular atrophy (SMA) before she turns 2 years old.

Egyptian comedian Mohamed Henedy took to Twitter on June 22, asking for urgent fundraising to save Ruqayya, saying that the girl “has a disease called muscular atrophy… An incurable disease... but there is only one treatment: An injection that she must take before turning two years old, or she could die… The problem is that [she] will turn two years old in ten days. The more time passes, the fewer opportunities for Ruqayya to live… Donate. Any amount whatsoever will help us save Ruqayya’s future and life.”

The little girl’s father, Mohamed from Alexandria, told Masrawy newspaper that they collected more than the required money for his daughter’s one-dose treatment, saying, “Thanks to Allah and then to the Egyptians, we collected the required amount of money.” The Zolgensma treatment [onasemnogene abeparvovec] is known as one of the most expensive therapies in the world.

The symptoms of SMA include muscle weakness and tremors, difficulty in breathing and swallowing, and changes in the shape of the limbs, spine and chest as a result of muscle weakness, as well as difficulty in standing, walking and possibly sitting.

The treatment was approved by the American FDA in 2019 and then by the European Medicine Agency in 2020. Globally, more than 2,000 children have been treated by Zolgensma as of March 2022, according to the Zolgensma website.

Last year, another child, Rayan from Alexandria, was treated with the Zolgensma injection a few days before turning two years old, Nagia Ali Fahmy, professor of neurology and director of the Muscular and Neurology Unit at Ain Shams Medicine, was reported as saying by Arab News in March 2021.

In July 2021, former Minister of Health Hala Zaid said in media comments that Egypt would start treating 10 out of 32 children with SMA.