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Pioneering medication for Asya delivered

asya

Medication to treat a Turkish Cypriot infant suffering from a rare, life-shortening spinal muscular atrophy (SMA) arrived in the island on Thursday.

Asya Polatli, who is turning one year on Tuesday, was said to be the first child to ever receive the treatment in Cyprus according to her father Ozan Polatli.

News of the arrival of Zolgensma medication was posted on the Asya Bebek support group page on Facebook.

“We are receiving our medicine from this moment … May it be granted to every family who dreams and waits for treatment and every baby who resists,” the group posted on the description of the photo of Asya next to the medication box.

Zolgensma is a one-off gene therapy used to treat children with SMA less than two years old.

The cost for the treatment, amounting to €2m, will be covered by the Republic of Cyprus.

Asya was admitted to Makarios hospital in Nicosia on September 27 to undergo the gene treatment following a different type of treatment at Sehir hospital in Ankara, Turkey.

Speaking to the media earlier this month, her father explained that the couple were told by doctors during the eleventh week of the pregnancy that the embryo suffered from the disease, but the parents chose not to terminate the pregnancy believing that the illness would not manifest.

Asya was fully diagnosed with the illness at four months old while she was unable to move from the age of two months.

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.

The father also described the immense heartbreak imposed on the family, most notably on their twin three-year-old daughters.

He said that Asya’s case was brought to the attention of the Cyprus government by head of the Turkish Cypriot teachers’ union (KTOS) Sener Elcil and the ‘This Homeland is Ours’, platform, after the family had launched fundraisers in a bid to raise the full amount.

 

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