Among them are Adam, Celine and Alia.. Egyptian hands saved 5 children from atrophy in 2022.

Bassant Sharkawy

Published: Monday, December 26, 2022 – 19:50 | Last update: Monday, December 26, 2022 – 7:50 p.m

In many cases, the hypothesis is believed that difficult dreams can be turned into reality, provided that they are believed. Thus, with hands full of hope and sincerity, the destinies of entire families were saved for free.

Rokaya and the twins Alia, Farida and Celine, then Adam Imad, and the list will continue in the coming months, they all made a great success story that came true on the field of the dream of treating children with spinal muscular atrophy type 2 in Egypt.

It is a difficult feeling that your child was born with spinal muscular atrophy type II, which is why he cannot move, walk or even sit. This harsh feeling that affected dozens of parents in Egypt met with an embodied glimmer of hope in the “Power of Social Media” initiative, which became the only lifeline that parents with atrophy depend on for their children, and wait their turn in the promotional campaigns run by the initiative’s website. to collect donations for atrophic patients, whose treatment for each case exceeds 40 million Egyptian pounds.

The non-governmental or for-profit site “The Power of Social Media” works with the efforts of a team of 100 volunteers who run popular donation campaigns for children with spinal atrophy type 2 and some very critical medical conditions, explaining their stories on social media platforms, and activating hashtags on their behalf on communication sites Twitter and Facebook, in a purely voluntary way, and all this would not have been crowned with success if it were not for the generosity of the Egyptians, the first addressees and the cornerstone of the end of excessive donations.

Ruqaya survives the atrophy and receives an injection
Ruqaya was the first child with muscular dystrophy. The page managed to raise £40 million from followers’ donations, to save her from spinal muscular atrophy type 2. The amount was completed last January, and she was injected with treatment.

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Alia and Farida are a dream come true
Last August, Egyptian Donations managed to raise 80 million Egyptian pounds for two girls, Alia and Farida, who are known in the media as “twins with spinal muscular atrophy type 2”, for the treatment of the two girls.

Donations broke the 80 million mark needed for treatment, thanks to the employees of the company “Petro Trade”, who gave Alija and Farida a part of their long-term salary, and represented the largest and most difficult part of the donations, with the efforts of the television presenter Tamer Shaltout, who appeared in broadcast live with the artist Nihal Abner to donate to two girls, and the efforts of Radio Net.

Celine is the impetus of hope for the march
Last October, popular donations of gold, clothes and Arab communities in different countries managed to save the baby Celine and give her a massive injection after raising 40 million pounds, which showed the determination and will of the Egyptians to save the dystrophic. children.

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Adam Imad and lifelong treatment
In mid-December, the costs of the treatment of the child “Adam Imad”, a patient with spinal muscular atrophy, were completed. To provide treatment only in the first year, which costs one million and 100 thousand pounds.

Child Adam was supposed to receive a genetic injection that cost £40 million, like Alia, Farida, Celine and Papera, but the doctors decided to change the treatment protocol for him with a drug (Resediplam) that is taken for life, rather than a one-time genetic injection, so he will Adam remained in fear of the future. Unknown all his life and in constant need of donations.

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Magdy Yacoub and the Egyptians save Zainab’s heart
Zainab’s case was not one of the spinal muscular atrophy cases that the “Power or Social Media” team had dealt with recently. Rather, it was a critical medical condition that required support, given the danger of delaying her rescue.

Fortunately, Magdi Yaqoub, an international heart surgeon, responded to the campaign to save Zainab. Muhammad Wanas, an official of the “Power of Social Media” site, confirmed to Al-Shorouk that Dr. Magdi Yaqoub and a supporting medical team performed a free intra-heart pulmonary artery transplant for Zainab. In the heart center of Dr. Magda Yacoub.

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Adam Mostafa is on his way
The “Power of Social Media” team is finalizing the work of collecting popular donations for Adam Mustafa, who also suffers from spinal muscular atrophy of the second type and needs treatment (drink) worth one million and 200 thousand pounds, similar to the case of Adam Imad, and the page announced on Saturday that donations had reached 330,000 pounds.

The page published the donation accounts of the Ministry of Social Solidarity, via Fawry account no. (90003), or branches of the National Bank of Egypt, Farir al-Agouza and Shubra, in an account named “Adam Mustafa Abu El-Ela .”

Engineer Muhammad Wans, the owner of the “Power of Social Media” initiative, says that the idea of ​​the initiative was completed in 2016 when a late case of cancer appeared in a young man, Abd al-Rahman Abu Hashima, who won the sympathy of many through communication platforms, and the support of businessman Ahmed Abu Hashim, but the young man died.

In an exclusive statement to “Al-Shorouk”, Wans added that he decided to establish a page to help critical cases, “Power of Social Media”, which broke the mark of 600,000 followers, and more than 100 volunteers from various provinces, to support critical health cases through communication platforms. , and save thousands of cases within 6 years, working from their homes; Since the institution has not officially announced itself.

And he continued: Successful partners are always people who look like us, who see cases and help spread them. They will always come first, social media celebrities come second; Because the site was created with their support, and they always publish cases, so it helps us faster.

And about his feelings after saving 6 cases of dystrophic children, he said: We are happy when we know that the amount of donations for one case has been filled so that we can work on the next case; Because there is another patient waiting, and that is the disadvantage of social networks in millions of donation campaigns, it is difficult to publish more than one case at the same time; Because the donations will not be completed.

And he continued: There are more and more children who do not know how to help them, because the syrup that cures spinal atrophy type 2 is still not used, and the proof is that, unfortunately, donation accounts are still being opened, and this will never be a solution, and we hope is that this crisis will end quickly because there is a chance that the children’s parents will leave other healthy children. Very little, according to specialist doctors.

Why did these children not enter the presidential campaign for the treatment of children with spinal atrophy?
It is significant that children with type 2 spinal muscular atrophy whose infection was detected after 6 months were not included in the presidential initiative to treat children with type 1 atrophy that was detected before 6 months. Therefore, the Ministry of Social Solidarity allowed type 2 patients to open Fawry bank accounts to collect charitable contributions, under the supervision of the Ministry, since the treatment for one case is in the form of an injection, which costs £40 million, and the other treatment (syrup) which costs £1,100,000 a year for life.

Expensive treatment.. What is spinal muscular atrophy?
Spinal muscular atrophy, in its first and second type, is a disease caused by a defect in the body’s genes and causes muscle stiffness. In case of deterioration, it affects the breathing and heart muscles, causing death.

Doctors prescribe the treatment of the disease either with a potable medicine, which costs a total of one million and 100 thousand pounds within a year, or treatment with a once-in-a-lifetime injection. The child is two years old to ensure effectiveness, and if it is delayed beyond two years, there is a greater spread of muscle atrophy, which can affect the respiratory and heart muscles, and lead to death.

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