Cairo — Roqaia Reda was born in Alexandria, Egypt, on July 13, 2020. For the first six months she was a healthy and happy baby girl. But her parents noticed some strange symptoms. Roqaia was eventually diagnosed with spinal muscular Atrophy (SMA), which is a rare neuromuscular disorder that can cause patients to lose control over their bodies.
Patients who have the most severe cases (usually those that occur in childhood) often die before their second birthday. People with mild cases are able to live until adulthood, although they may be left paralysed.
SMA can be treated with a few drugs. The most effective is an intravenous single-dose treatment of Zolgensma. Gene therapy is the most expensive drug in existence. It was approved in 2019 for SMA treatment in the United States. Novartis estimates that a treatment will cost approximately $2.1 million.
Although it would be difficult to find that amount of money for most families, it is possible to give the money to the child before their turn.
Roqaia’s parents couldn’t comprehend the situation, especially since Roqaia was only a few weeks away from her second birthday. The minimum wage in Egypt is $145 per month. To afford treatment, a family of two with this wage would need to save more than 600 years.
Roqaia’s relatives sought help. After a slow start, a crowdfunding campaign was launched via social media. Actors, singers, and athletes helped spread the word.
Mohamed Wanas (an Egyptian IT engineer living in Dubai) was one of the people behind this campaign. He runs “The Power of Social Media,” a non-profit organization that helps people with health issues. Wanas led the crowdfunding effort to support Roqaia’s family with his group of 120 volunteers, he called them the “Beehive”.
CBS News interviewed him and said that although his group analyzes data in order to maximize donations via social media, it was the real-life experience of the family’s struggle that really made the difference.
Wanas stated that Roqaia was her true hero and did the job. “In one her mom’s live video, the girl fell and shouted, “Help me, please!”
This moment was shared online by Roqaia’s father Mohammed Reda, who told CBS News that donations were “doubling and jumping after the event.”
After just 23 days of fundraising they had collected enough money to pay for Roqaia’s treatment. Most of the donations came from ordinary people, some of which were just a dollar or two. Even kids said that they had filled their piggy banks to support the cause.
Roqaia will probably get the most expensive birthday gift she will ever receive: The chance to live a normal lifestyle. The Zolgensma treatment for Roqaia is being sent to Europe and should arrive with her doctors before her birthday.
As neighbors joined Roqaia and her family to celebrate their victory, they also sang in support of twins living more than 100 miles away.
“Whose turn will it be next?” “Whose turn next?” cried one reveler amid the joy. “Alyaa, Farida!” The crowd responded with a collective “Alyaa and Farida!” “We can do it! We can do it.”
Aya, the mother of the twins, said that she waited seven years to become a mother before being blessed with Alyaaa and Farida. “When my Aliya turned seven months old, I noticed a regression in her movement and, after many checks and follow-up with a neurologist, she was diagnosed as having SMA.”
Farida was soon tested positive for the disorder.
Although the fundraising campaign for Alyaa & Farida started before that for Roqaia’s, Roqaia’s deadline was earlier and Wanas stated “it didn’t make sense to run both campaigns simultaneously.” The fundraising campaign for Alyaa was canceled and Farida’s was rescheduled.
He said that the case was difficult. “You don’t want to leave the mother without a choice. What if we have enough money to buy one shot? Who will the mother give it too?
According to regulations by the Ministry of Solidarity, the significant amount of money that was left over from Roqaia’s campaign — Wanas would not give CBS News an exact number — will be used for the next most urgent case.
Wanas believes that it will be given to the twins.
Aya, Aya’s mother, said that “I have great dreams.” “Roqaia’s campaign doubled my hope in my heart.”
She said, “This is our last chance to save my babies’ lifes.”
When asked what her family would do with the money raised for one treatment, she said to CBS News that she didn’t want to think about this.
Aya and Wanas both said that they are confident that they will make it in time to meet the deadline. They still have 50 days to raise the $3.5 million needed to purchase the treatment for both girls.
Wanas’s work is not yet finished. Celine, a third little girl, has just a few more months until her second birthday. However, she will likely be the next to join the ranks of the twins.
Wanas sometimes gets a request for help too late. A young boy suffering from SMA was contacted by his family recently. He will be turning 2 in a few weeks.
It takes time to complete the paperwork and open bank accounts that can be used to collect government funds. He explained that when certain cases come to us with very limited time, we know we can’t help.” he said to CBS News.
Roqaia’s campaign has been a huge success. It brought to light many new cases and generated a lot of media attention. This all helps to fuel campaigns to save these kids.
The families all know that public attention can fade over time. Their children’s medical condition won’t.
