£80,661 has been raised after a donation campaign for Ali was launched by the Alevi Cultural Center and Cemevi England (İAKM) From November 26 to December 7.
The live video was also held on December 7 on the İAKM social media page with chair Zeynel Akdoğan, British Alevi Federation chair İsrafil Erbil, representatives of non-governmental organizations, business people and community members attending.
Spinal Muscular Atrophy (SMA), colloquially known as ‘loose baby’ syndrome. This disease, which is seen in newborn babies and affects the motor nerve cells in the spinal cord, eliminating the ability to walk, eat or breathe, is a very dangerous and fatal disease for babies. The treatment is very expensive; thousands of families are struggling with the disease. Ali is also struggling with this disease. His family is working on the “Zolgensma” treatment approved by the American Food and Drug Administration (FDA). The cost of treatment in America and European countries is approximately 2.5 million Euros.
Ali mother, Yeter Ağum, said her son needs to receive this treatment in order for him to survive and that they do not have much time, “We started the campaign two months ago but it is progressing very slowly. Ali was also 28 months old. Normally, he should have received this treatment before the age of two. In America, this treatment was applied to children under two years of age. Currently, all babies under 21 kilos in all countries of Europe can receive this treatment. 99 per cent of the results are good in children under 13 kilos. Ali is 9 kilos….”
IKAM said: ‘‘We started a donation campaign for baby Ali Eymen Ağum on 26 November. We thank all our community who did not leave us and Ali Eymen’s family alone during the campaign. The campaign, especially in England, turned into a great solidarity and that has made us proud. We hope that our society will always come together again in its difficult days and we will experience the union we need more often. As the UK Alevi Cultural Center and Cemevi, we collected 80,661 pounds in total. We did our part by sending it to the account opened for Ali Eymen. We hope Ali Eymen will be healthy as soon as possible. “