CAIRO -

In what looks like folk epics, a large donation campaign succeeded in raising about 45 million Egyptian pounds (one dollar equals 18.78 pounds);

To secure the most expensive treatment in the world for a girl who is about to complete her second spring, who suffers from a rare disease.

The story belongs to the girl Ruqayya, from Alexandria Governorate (north), who suffers from spinal muscular atrophy. Her family was racing for a time when there were only a few days left.

To complete the miracle of providing a treatment (Zolgensma injection) estimated at about two million dollars, before the two years are completed after a few days.

A few days ago, the family launched an account to collect donations through social media platforms in order to reach the largest possible segment, to be adopted by celebrities, journalists, activists, and official bodies in the state, so that its story will turn from a crisis to a popular carnival that will hopefully extend its impact to many similar cases.

In the girl’s birthplace in Alexandria, between the corridors of the popular areas, the people organized themselves and set out with paper pictures and numbers of donation accounts, in a scene that did not differ much from the virtual reality, which also witnessed a large popular demonstration under several hashtags such as #Save_Ruqaya, #Child_Ruqayya and #Rukaya_Mahtaajkm, which Topped the list of the most popular hashtags on Twitter.

Until the early hours of Saturday morning, Egyptians celebrated the completion of donations, which amounted to 45 million pounds, to provide the most expensive treatment in the world for the girl Ruqayya.

Impossible is a word that does not exist in the Egyptian dictionary.. An epic of matchless donations, through which they were able to collect more than 40 million pounds to save the girl Rokia, who suffers from muscular dystrophy pic.twitter.com/AcXvwOTddW

- Al Jazeera Egypt (@AJA_Egypt) June 24, 2022

From the womb of suffering

Ruqayya was born naturally, according to her mother’s statements to local media, without suffering from any health problems, then her feet seemed to be permanently cold, and doctors advised exposing her to the sun, and as the days passed, she had strange symptoms for a newborn girl, that her feet became white. An indication of the lack of nerves, and when she reached 6 months, she was unable to stand or move her body during sleep.

Doctors told Ruqayya's family that she had a "motor delay" and that she should wait until she was a year and a half old;

After that, medical examinations concluded that she had muscular dystrophy, and as soon as the family learned of the rare disease, they were shocked because the treatment was the most expensive in the world, so they resorted to a presidential initiative launched last year to treat muscular dystrophy.

Once again, Ruqayya's family was shocked when she learned that the presidential initiative includes children under the age of 6 months, when she was one and a half years old, to eventually resort to opening an account for donations under the supervision of the Ministry of Social Solidarity, which helped complete the procedures, according to the statements of the mother Ruqayyah.

The donations poured in quickly, and in a few days exceeded the required number and amounted to 45 million pounds, to achieve the dream of life in the treatment of a cure rate of 90%, according to her mother.

Ruqayya's story inspired the families of other children suffering from the same disease, to reach through donations and great popular solidarity the high price of treating the rare disease.

This moon is called Roqaya.. Roqaya. She has a disease called muscular dystrophy.. A disease that has no cure.. Except for one treatment, but an


injection that you must take two years before you die.. The problem is that there are ten paper days that are completed in two years, and every time that passes, the chances of Roqyah are less. Donate any amount whatsoever.. it will help us save a future and a life of ruqyah pic.twitter.com/IomKodmvoS

— Mohamed Henedy (@OfficialHenedy) June 22, 2022

expensive treatment

Spinal muscular atrophy is a group of diseases that make muscles weaker and less flexible over time, and is caused by a problem with the genes that control the way the body maintains healthy muscles.

It affects one child out of 6 to 10 thousand children in the world, while the condition of most people worsens over time, and some people may lose the ability to walk or talk, and there are more than 30 types of muscular dystrophy, each type differs based on the genes that cause it, the muscles it affects, the age at which symptoms first appear, and how quickly the disease progresses.

Symptoms of the disease appear early, often before 18 months after birth, and include inability to kick while lying on the back, inability to sit, eating problems, such as choking or difficulty swallowing and breathing, muscle weakness and contracture, difficulty getting up, running or Jumping or walking on toes.

The Zolgensma injection is the first gene therapy for spinal muscular atrophy that received approval from the US Food and Drug Administration (FDA) in 2019, and was allocated to children under two years of age, and its cost is about $2.1 million, equivalent to 40 million pounds, according to medical reports.

- The joy of #Ruqayya and her family after collecting an amount of 45 million pounds, and the amount can still be increased


- When you grow up, Roqaya, and you remain a doctor, a teacher, a lawyer, or six homes, I keep telling your children how the Egyptians made an epic that shook #Egypt in order to live and tell them about the greatness that the middle class made Who are trying to kill her pic.twitter.com/AcGFBlOZKT

— Mohamed Tayea (@mtaiea87) June 25, 2022

Congratulations, they collected 45 million and 353 thousand pounds for the treatment of Roqaya and Yazid workers, 8 days before the deadline for the injection pic.twitter.com/8I571oOLuW

— ahmed ryan (@ahmedelmaasry) June 25, 2022

Great, Egypt 🇪🇬 # Save_Hayat_Ruqiah pic.twitter.com/IsNZBTuU0n

- Medhat Shalaby madhat shalby (@madhatshalbe) June 25, 2022

The time has come for the Ministry of Health to make an agreement with the company that sold the medicine, as it happened with


the C virus.

— Muhammad Abdullah (@Mohamed_Abda11a) June 25, 2022

The child Ruqayya in her first appearance after collecting 45 million pounds for her treatment

The authentic people of Egypt lived in a time of adversity, with minerals appearing

It is called that the Ministry of Solidarity announced that Mohamed Salah was one of the first donors to Roqaya and his donation reached 3 million pounds pic.twitter.com/mvHQRoG5RN

— Kholod Ahmed (@KholodA32611598) June 25, 2022