Cairo Rokaya Reda was born on July 13, 2020 in Alexandria, Egypt. She seemed to be a happy and healthy baby for her first six months, but then her parents started noticing some unusual symptoms. After several tests, Rocaya was diagnosed with spinal muscular atrophy (SMA), a rare degenerative neuromuscular disorder that leaves patients without control over their bodies.
In the most severe cases, which usually appear in childhood, patients often die before reaching their second birthday. Most people with moderate cases live into adulthood, but they are often left unable to walk.
There are a few medications to treat SMA in young children, the most effective of which is single-dose, intravenous treatment of zolgensma. The gene therapy, which was only approved for use on young SMA patients in the United States in 2019, is often touted as the world’s most expensive drug. Manufacturer Novartis has earmarked about $2.1 million for the treatment.
While it would be difficult for most families around the world to find that kind of money, there is little time to even do so, as it must be administered before the child is 2 years old.
It was impossible for Rokaya’s parents to fathom, especially since her second birthday was just weeks away. For perspective, the minimum wage in Egypt is around $145 per month. A family with two parents would have to save over 600 years for treatment at such wages.
So Rokaya’s family pleaded for help. A crowdfunding effort was launched on social media, and after a slow start, it began to gain traction as actors, singers, athletes and other celebrities helped spread the word.
One of the people behind the campaign was Egyptian IT engineer Mohamed Vanas, who lives in Dubai and runs a non-profit organization called “The Power of Social Media”, which helps people with medical issues. Vanas and his team of more than 120 volunteers — the “beehive,” he calls them — led the crowdfunding effort for Rocaya’s family.
He told CBS News that while his group studies and analyzes data to maximize donations via social media, it was a real-life glimpse into the family’s daily struggle that really made the difference.
“Rockaya was the real hero, she did the job,” Vanas told CBS News. “In a live video of her mom, the girl collapsed and shouted, ‘Help me, help me!
The moment echoed online, and Rokaya’s father, Mohamed Reda, told CBS News that “charities were doubling and jumping afterward.”
By June 25, after just 23 days of fundraising, he had not only collected the amount needed to treat Rocaya, but also hundreds of thousands of dollars more. Most of the donations were small, many of them just a dollar or two from ordinary people – including children who said they would empty their piggy banks.
To mark his second year, Rokaya will receive perhaps the most expensive birthday gift ever: a chance to live a normal life. Her Zolgensma treatment is being sent from Europe, and it must be at her doctors before her birthday.
But as neighbors joined Rokaya’s family to celebrate the victory, they also raised slogans in support of two other little girls, the twins, who live more than 100 miles apart.
“Whose turn next?” Amidst the glee one of those having fun shouted. “Alia and Farida!” There was a reaction from the crowd. “We can do this! We can do this.”
Aaya, a mother of young twins, told CBS News, “I waited for seven years to become a mother, until we were blessed with Alia and Farida.” “When he turned seven months old, I noticed a regression in my Aaliyah’s movement, and after several tests and a follow-up with a neurologist, she was diagnosed with SMA.”
Farida tested positive for the disorder not long after.
The fundraising campaign for Aaliyah and Farida had actually started earlier than the one for Rokaya, but since Rokaya was older, the deadline for her treatment was sooner, and Vanas said, “It’s time to run both campaigns together.” There was no point. We had to stop one for Alia and Farida.”
“This case is tough,” he told CBS News. “You don’t want to be in a situation where you leave the mother with a choice. Like, what if we only collected enough money for one shot, who would the mother give it to?”
The money left over from Rokaya’s campaign – Wannas would not give CBS News an exact figure – will go to the next most urgent case, according to rules set by the country’s Ministry of Solidarity.
Vanas believes it will go to the twin sisters.
The girls’ mother Aya said, “I have high hopes.” “Rokia’s campaign doubled the hope in my heart.”
“This is our last hope to save the lives of my children,” she said.
Asked what her family would do if enough money was raised for just one treatment, she told CBS News: “I don’t want to think about it.”
Both Vanas and Aya said they were confident they would get it done before the deadline. He still has about 50 days to scrape together the roughly $3.5 million needed to buy both girls for treatment.
And then there are others waiting in line to benefit from the work of Vanas and his team. A third little girl, Celine, still has months before her second birthday, but she’ll likely be after the twins.
Sometimes, Vanas gets his call for help too late. The family of a young boy with SMA recently made contact, but he will be turning 2 in a matter of weeks.
He said, “The process of opening bank accounts authorized to do the paperwork and collecting funds monitored by the government takes time. So, when some cases come to us for help in a very short time, we know ‘We can’t help it,'” he told CBS News.
The success of the campaign for Rokaya has garnered significant media attention, leading to several new cases and a flurry of local newspaper headlines. All this is helping fuel the campaigns to save these children.
All families know that public attention often fades with time. But their children’s medical conditions will not.