ISTANBUL, Turkey - Spinal Muscular Atrophy (SMA) disorder, which has been increasing in recent years in Turkey and its southeastern Kurdish region (Bakur), has become a daunting threat to the lives of children and their families are desperately looking for ways to save them from the disease.
Since there is no cure for SMA disease in Turkey and the government does not pay for it, families are forced to hold fundraising campaigns to be able to afford taking their children abroad for treatment.
Four-year-old Sumaiya Ibrahim has the most severe form of SMA. Around 1.7 million euros is needed for her treatment. So far, nearly 78 percent of this money has been donated to the fundraising campaign.
However, the campaign is moving slowly and there is little time left. If the amount is not raised, the state will take over what has so far been raised. The family is therefore pleading for help.
"We wanted to make our voice heard, but it was not heard. The more people hear our voices in this campaign, the sooner the campaign will end," Ibrahim Kurtalis, Sumaiya's father, told Rudaw's Rawen Sterk over the weekend. "Our only concern is that our child is saved. We have worked hard so far and we want you to see the result of our work.
"There is not much time left, and if the governor's deadline expires, we will no longer be able to collect donations," he added.
The medicine required to cure SMA is highly expensive and difficult to obtain as it is only available in a limited number of countries. Most countries have not yet approved this treatment.
There are more than a thousand children with SMA in Turkey and the families are helpless.
The state does not pay for the treatment of this disease.
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