London’s Alevi community joined together last night in an appeal for SMA patient Ali Eymen calling on people to join and donating towards his life-saving treatment.
A donation campaign for Ali was launched by the İAKM on Monday, December 7. The live broadcast program was attended by İAKM President Zeynel Akdoğan, British Alevi Federation President İsrafil Erbil, representatives of non-governmental organizations, business people and community members.
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. At the same time, he has dislocations in his arm and hip. That’s why we have no time. I wish we could start and end this campaign earlier.
Donation are being collect by İAKM towards Ali’s treatment, if you wish to donate you can make a bank transfer to Account name: London Alevi cultural centre and cemevi – Sort code: 20-46-57 – Account no: 50932957 and IBAN: GB30 BUKB 2046 5750 9329 57