Arya and Doruk with SMA want to live


Lerato Khumalo

Spinal Muscular Atrophy (SMA), which is seen once in every 6 thousand births in Turkey, continues to disrupt the lives of many families. While it is estimated that there are approximately 2 thousand SMA patients across the country, there are 3 different approved treatments in the world for SMA, which causes muscle loss and weakness. However, the treatment of SMA, which is a genetic hereditary disease, involves a difficult process. 4-year-old Arya Manhas, who lives in Denizli, and 9-year-old Doruk Çukurcu, who lives in Izmir, are among the names fighting for their lives against SMA… The family of two children with SMA who need medication brought from abroad to survive is 1 million 800 thousand dollars. They are thinking hard about how they will supply the amount of medicine.

The muscles of Arya, who is only 4 years old and has SMA TYPE 1, are losing strength day by day, leaving her immobile.


Mother Ayşe Manhas, who was looking for remedies day and night to help her daughter Arya Manhas get rid of the disease, explained her experiences as follows: “Arya is now 4 years old and has SMA Type 1, a progressive and fatal muscle disease. Her movements started to decrease when she was only 4.5 months old; she was taken to intensive care when she was 10 months old.” My daughter had a tracheostomy because she had difficulty breathing. Her condition is getting worse day by day and we are constantly hospitalized. My son can’t even breathe without support, let alone eat and drink. Arya’s governorship leave campaign has been going on for a very long time.”


Stating that they were able to collect 64 percent of the money needed for the medicine that will bring little Arya to life, Manhas said, “3 months of treatment in Dubai, 1 million 800 thousand dollars. I don’t know what to do at all. We also had a lot of problems in announcing the campaign. The conscience and helpfulness of the Turkish people is my greatest hope. SMA is really a very difficult disease to treat. “All I want is to be able to collect the money for the medicine.” he said.


Mother Manhas, who also said that she cannot work because she cannot leave her daughter Arya, who has SMA, said, “We are struggling with a very insidious and bad disease. I also have a high school student son. We are always at home, we can never go out. Because I am separated from my wifeum gWe are trying to make ends meet with Arya’s disability pension. I’m ashamed of this, but we have to right now. I was working before. However, due to Arya’s situation, I cannot leave her alone,” he said.

Arya and Doruk with SMA want to live - Picture: 2
Doruk Çukurcu, a 9-year-old patient with SMA Type 2, says, “Every child wants toys, but I want my medicine.”


9-year-old Doruk Çukurcu, another SMA patient trying to hold on to life, is another tiny body waiting for a helping hand to reach out to him… While a charity campaign was launched for Doruk, who lives in Izmir, by his mother Arzu Ergün, the requested amount has not been collected yet. Mother Ergün explained her experiences as follows: “Doruk was diagnosed with SMA Type 2 when he was one year old. Doctors said ‘there is no cure for this disease.’ Doruk was treated in hospitals until he was 2.5 years old. “After a while, the doctors told me that my son needed to be connected to the device, and I was surprised at what happened.”


“When Doruk turned 3 years old, we started taking a medicine developed for SMA disease and saw some benefit. However, for a healthy life, we applied for gene therapy in Dubai. We started our campaign with the permission we received from the Izmir Governorship. Only 33 percent of the campaign amount has been collected so far. There is 1.5 months left until the end. Since my son is 9 years old, he is aware of everything and follows his own campaign. While his peers are receiving education at school, my son is waiting to regain his health.”