Egyptians in online bid to save child with rare illness

CAIRO: Egyptians have come together to raise funds online for a baby girl suffering from a rare life-threatening disease.
Celine, who is 15 months old, was diagnosed with spinal muscular atrophy four months ago.
The genetic condition makes the muscles weaker, and causes increasing problems with movement and breathing.
The Twitter hashtag #Save_Celine is trending in the country, with calls to raise 40 million Egyptian pounds ($2 million) to pay for expensive gene therapy medication via a Zolgensma injection.
The hashtag has been used over 100,000 times as people call for contributions to support the girl.
Similar campaigns were organized in the past for other children suffering from the same disease.
“We have resorted to opening the door for donations in coordination with the Ministry of Social Solidarity. So far, we have collected about EGP12 million for the injection,” Celine’s father told Arab News.
Ramy Elhamy, who takes part in campaigns to help sick children, told Arab News: “The injection that Celine needs is the first gene therapy for spinal muscular atrophy caused by genetic changes, and gained the approval of the US Food and Drug Administration in 2019.
“It is the most expensive injection in the world, which helps treat respiratory functions and gradually puts the child on the path of normal growth. It is followed by physiotherapy and pulmonary rehabilitation.
“We launched the campaign to save Celine after the success of such campaigns for other children who had the same rare disease. We knocked on all doors to save the child, and many responded to our calls.”
Egyptian actor Mohamed Henedy shared a photo of the child with the caption: “This honey is called Celine. She suffers from a very rare disease and her condition is starting to worsen. The coming days can save Celine’s life. If you don’t know how to donate, share the hashtag, and retweet and write about Celine on your account.”
He added: “This is the simplest thing that you can offer because others can donate. All Egyptians have gathered and saved the life of Ruqayya and the life of the twins Alia and Farida, and now it is our turn, with pleasure, that we are helping Celine.”
Another actor, Ahmed Safwat, joined the donation campaign to highlight the significance of social solidarity and the ability of Egyptians to achieve this goal, as they previously did with other children.
Media personality Esaad Younis hosted Celine’s mother, Radwa Hamdi, on her program to appeal for donations.
Earlier, Hamdi had asked Egyptian President Abdel Fattah El-Sisi for help, saying: “I am pleading with you. I know that the injection is expensive, but surely the life of my daughter and your daughter is more expensive. We are asking the state to help Celine take the Zolgensma injection, even if in turn it will take all our salaries. She is all I have.”

Egyptians in online bid to save child with rare illness