Cairo — Roqaia Reda was born on July 13, 2020 in Alexandria, Egypt. She seemed like a happy and healthy child for the first six months, but then her parents started noticing some unusual symptoms. After a series of tests, Roqaia was diagnosed with spinal muscular atrophy (SMA), a rare degenerative neuromuscular disorder that leaves patients without control of their bodies.
In the most severe cases, which are generally those that manifest in early childhood, patients usually die before the age of two. Most people with moderate cases live to adulthood but are often unable to walk.
There are a couple of medications to treat SMA in young children, the most effective being a single dose intravenous treatment of Zolgensma. The gene therapy, which was only approved for use in young SMA patients in the United States in 2019, is often considered the most expensive drug in the world. The manufacturer Novartis puts the price of a treatment at about 2.1 million dollars.
While finding that amount of money would be difficult for most families around the world, there is also little time to do so, as it must be given to the child before their 2nd birthday.
For Roqaia’s parents, it was impossible to imagine, especially since her second birthday was a couple of weeks away. For perspective, the minimum wage in Egypt is about $145 per month. A two-parent family on that kind of salary would have to save for more than 600 years to pay for treatment.
So, Roqaia’s family sought help. A crowdfunding effort was launched on social media and, after a slow start, began to gain traction as actors, singers, athletes, and other celebrities helped spread the word.
One of the people behind the campaign was Mohamed Wanas, an Egyptian computer engineer who lives in Dubai and runs a non-profit organization called “The Power of Social Media,” which helps people with medical problems. Wanas and her team of more than 120 volunteers, the “Hive” she calls them, led the crowdfunding effort for Roqaia’s family.
He told CBS News that while his group studies and analyzes data to maximize giving through social media, it was a real-life look at the family’s daily struggles that really made the difference.
“Roqaia was the real hero, she got the job done,” Wanas told CBS News. “In one of her mother’s live videos, the girl fell down and screamed, ‘Help me, help me!'”
The moment resonated online, with Roqaia’s father, Mohammed Reda, telling CBS News that “the donations doubled and increased afterwards.”
By June 25, after just 23 days of fundraising, they had not only raised the amount needed for Roqaia’s treatment, but hundreds of thousands of dollars more. Most of the donations were small, many just a dollar or two, from ordinary people, including children who said they had emptied their piggy banks for the cause.
To commemorate her second year, Roqaia will probably receive the most expensive birthday present she has ever received: the opportunity to lead a normal life. Her treatment with Zolgensma is shipped from Europe and she should be with her doctors before her birthday.
But when neighbors joined Roqaia’s family in celebrating the victory, they also sang in support of two other girls, twins who live more than 100 miles away.
“Who’s turn is it?” yelled one of the revelers in jubilation. “Alyaa and Farida!” was the response from the crowd. “We can do it! We can do it.”
“I waited to be a mother for seven years, until we were blessed with Alyaa and Farida,” Aya, the mother of the twins, told CBS News. “When they were seven months old, I noticed a regression in my Aliya’s movement, and after several check-ups and follow-up with a neurologist, she was diagnosed with SMA.”
Farida tested positive for the disorder shortly after.
The fundraising campaign for Alyaa and Farida actually started earlier than Roqaia’s, but since Roqaia was older, her treatment deadline was earlier, with Wanas saying “it didn’t make any sense to do both campaigns together. We had to stop one for Alyaa and Farida.”
“This case is more difficult,” he told CBS News. “You don’t want to be in a position where you leave the mother with a choice. For example, what if we raise enough money for one shot, which one will the mother give it to?”
The significant sum of money left over from Roqaia’s campaign (Wanas did not give CBS News an exact figure) will go to the next most urgent case, according to regulations set by the country’s Ministry of Solidarity.
Wanas thinks it will go to the twin sisters.
“I have high hopes,” said Aya, the girls’ mother. “The Roqaia campaign doubled the hope in my heart.”
“This is our last hope to save my babies’ lives,” he said.
When asked what his family would do if only enough money was raised for a single treatment, he told CBS News, “I don’t want to think about it.”
Both Wanas and Aya said that they were confident that they would make it before the deadline. They have about 50 days to come up with the roughly $3.5 million still needed to buy treatment for both girls.
And then there are others waiting in line to benefit from the work of Wanas and her team. A third girl, Celine, still has a few months to go before her second birthday, but will likely be next after the twins.
Sometimes Wanas receives a request for help too late. The family of a boy with SMA recently reached out, but he will be 2 years old in just a couple of weeks.
“The procedures to do the paperwork and open authorized bank accounts to collect funds monitored by the government take time. So when some cases come to us for help with very little time, we just know we can’t help,” he said. CBS News.
The success of the campaign for Roqaia has caught the attention of the media, bringing to light a series of new cases and a flurry of headlines in local newspapers. All of this helps drive campaigns to save these children.
All families know that public attention often fades over time. But your children’s medical conditions will not.