Cairo— Roqaia Reda was born on July 13, 2020 in Alexandria, Egypt. She looked like a happy and healthy baby girl for her first six months, after which her parents began to notice some unusual symptoms. After a series of tests, Roqaia was diagnosed with spinal muscular atrophy (SMA). This is a rare degenerative neuromuscular disorder that causes the patient to lose control of the body.
In the most severe cases that commonly appear in early childhood, patients often die before reaching their second birthday. Most people with moderate cases live to adulthood, but they are often left unwalkable.
There are several medications for treating SMA in infants, but the most effective is a single intravenous treatment of Zolgensuma. Gene therapy, approved for use only in young SMA patients in the United States in 2019, is often referred to as the world's most expensive drug. The manufacturer Novartis has a treatment price of about $ 2.1 million.
Finding this kind of money can be difficult for most families around the world, but you have little time to do so because you have to administer it to your child before the age of two.
It's hard to understand for Rocaia's parents, especially because her second birthday was only a few weeks away. It was possible. From a point of view, the minimum wage in Egypt is about $ 145 per month. A family with two parents at such a wage must save for more than 600 years to receive treatment.
So the Rocaia family sought help. Crowdfunding efforts began on social media, and after a slow start, they began to gain momentum as actors, singers, athletes and other celebrities helped spread the word.
One of the people behind the campaign is an Egyptian IT engineer who runs a non-profit organization called "The Power of Social Media" that lives in Dubai and helps people with medical problems. It was Mohamed Wanas. His team of Wannas and more than 120 volunteers (he calls them "Beehives") led a crowdfunding effort for the Rocaia family.
While his group researches and analyzes data to maximize donations through social media, a real glimpse into the daily struggle of the family makes a real difference. I told CBS News.
"Rocaia was a real hero, she did the job," Wanath told CBS News. "In one of her mom's live videos, the girl fell and shouted." Help, help. "
The moment resonated online, Rocaia's father. Mohammed Reda told CBS News: "Since then, donations have doubled and surged."
By June 25, after just 23 days of funding, they had raised the amount needed to treat Roqaia. Not only did he raise hundreds of thousands of dollars. Most of the donations were small, many from ordinary people, including children who said they emptied their piggy banks.
In the second year, Rocaia may receive the most expensive birthday gift ever. This is your chance to lead a normal life. She has her Zolgensma treatment sent from Europe, and it must be with her doctor before her birthday.
But when her neighbors joined Rocaia's family to celebrate her victory, they also favored two other girls, twins, who lived more than 100 miles apart. And chanted.
"Who will turn next?" Cried one of the drinkers in delight. "Alyaa and Farida." There was a reaction from the crowd. "We can do it. We can do it."
"I have been waiting to be a mom for seven years until I am blessed with Alyaa and Farida. "It was," Aya, a young twin mother, told CBS News. "When they were seven months old, I noticed a regression in my Aria movement, and after some checks and follow-up by a neurologist, she was diagnosed with SMA."
Farida soon tested positive for this disorder.
The Alyaa and Farida fundraising campaign actually started before the Roqaia fundraising campaign, but because Roqaia was older, the deadline for treatment was earlier. Wanas said, "It makes sense to run both campaigns together. I had to suspend the campaigns for Alyaa and Farida."
"This case is more difficult. "He told CBS News. "I don't want to leave my mother a choice. For example, if I collect enough money with just one shot, which one will my mother give?"
The large amount left from Roqaia's campaign — Wanas does not provide accurate numbers to CBS News — goes to the next most urgent case, according to the rules set by the Ministry of Solidarity of the State. increase.
Wannas believes it goes to twin sisters.
"I have great hope," said Aya, the girl's mother. "The Rocaia campaign has doubled my heart's hope."
"This is my last hope to save my baby's life," she said.
When asked what the family would do if a single treatment was enough to raise money, she told CBS News, "I don't want to think about it."
Wanas and Aya said they were confident they could achieve it before the deadline. They have about 50 days to scrape together about $ 3.5 million still needed to buy treatment for both girls.
And there are others waiting in line to benefit from the work of Wanas and his team. Celine, the third little girl, is still a few months before her second birthday, but could be her twin's next birthday.
From time to time, Wanath receives a petition for help too late. Recently, a family member of a boy with SMA was contacted, who will be two years old in just two weeks.
"It takes time to do the paperwork and open a bank account to raise money for government monitoring, so you may be asked for help in a very short amount of time. Help," he said. Told CBS News.
The success of Roqaia's campaign has caught the attention of the media, revealing many new incidents and a surge in local newspapers. .. Heading. It all helps promote campaigns to save these children.
All families know that public attention often diminishes over time. But the medical condition of their children is not.
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