One-year-old baby Asya Polatli is undergoing a rare gene treatment in Nicosia for spinal muscular atrophy (SMA) following the arrival of her medication.
News of the arrival of Zolgensma medication was posted on the Asya Bebek Facebook group page, set up by volunteers to support the Turkish Cypriot baby.
Baby Asya, as is she now known, started her medication and her parents are delighted over the arrival of the medication.
“We are about to take our medicine any moment now.
“We hope that every family who has a child fighting disease has access to medication.
“Believe us when we say it is like we are living a dream. We love you,” was the message Asya’s parents sent out through the Facebook page.
According to her father, Ozan, Asya, who is turning one year on Tuesday, was said to be the first child ever to receive the treatment in Cyprus.
Zolgensma is a one-off gene therapy used to treat children with SMA under two years old, with the whole treatment costing around €2 mln.
The Republic of Cyprus will cover the cost of the treatment after the government intervened to offer the child the treatment she needed.
Baby Asya was admitted to Makarios Hospital in Nicosia on 27 September after being flown in from a hospital in Ankara, where she was on a different treatment.
The plight of Baby Asya has united the Turkish Cypriot community in recent months.
A massive campaign tried to raise the money needed, but it could not reach the necessary amount.
The issue was brought to the attention of Foreign Minister Nicos Christodoulides and President Nicos Anastasiades by Sener Elcil, the general secretary of the elementary teachers’ union KTOS.
Elcil had sent them letters asking for the Republic to intervene to save the girl’s life.
SMA is a group of hereditary diseases that progressively destroys motor neurons in the brain stem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing, leading to muscle weakness and atrophy.
Baby Asya is suffering from Type 1 SMA, with her family and physicians hopeful that the treatment will end the child’s suffering.
