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Turkish Cypriot SMA baby takes media spotlight

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The plight of eleven-month-old SMA baby Asya Polatli has taken the media spotlight in the north, leaving the meeting between Turkish Cypriot leader Ersin Tatar and President Nicos Anastasiades in New York in its shadows.

The little girl was admitted at Makarios children’s hospital on Monday to undergo a rare gene treatment for spinal muscular atrophy (SMA), after the Republic stepped in to cover the high cost of the treatment.

The infant and her parents had been flown in from Turkey by air ambulance on Monday, where she had been hospitalised for rapid loss of muscle mass.

Baby Asya is to be administered with Zolgensma, a gene therapy used to treat children with SMA less than two years old. The medicine is administered in a one-time-only dose, and costs more than €2 mln.

Authorities in the Turkish occupied north have found themselves in a tight spot after a public outcry and criticism of “doing nothing” to help the child.

On Tuesday, the head of the Turkish Cypriot health authority, Unal Ustel argued that the ruling coalition had already decided to cover the cost of the treatment.

Ustel further said that the authorities in the north had already sent Asya to a hospital in Ankara to be treated, and had already received the first dose of the designated medication.

Asya was admitted at Ankara City Hospital on August 23, but because the cost could only be covered through Turkey’s social security system, authorities in Ankara had initially rejected taking on the cost.

Ustel said, “in order to overcome this obstacle, we had entered talks with authorities in Ankara, convincing them to give the girl and her family Turkish citizenship”.

 

Turkish citizenship

The family was granted citizenship on September 22, with Ustel saying that doctors at Ankara City Hospital had begun administrating the first dose of the medication.

Ustel said it was the girl’s family who decided to interrupt the treatment in Ankara and fly to the Republic to have their child treated at the Makarios hospital.

The ‘health minister’ reassured that the authorities in the north were committed to do anything they could to support Asya and her family.

Ozan Polatli, the father of Baby Asya, as she is now known, stated that they were contacted by the authorities of the Republic of Cyprus, but they were in disbelief, as they “had fallen into despair because of all the promises that had fallen through”

In comments to Turkish Cypriot media, Polatli said that they could only believe the good news given after correspondence with the Republic’s officials.

“Now there is finally light at the end of the tunnel,” said Baby Asya’s father.

Polatli said that they had been struggling to raise the money for the past eight months, with campaigns set up with the help of volunteers in the north.

“With each passing day, we felt that Asya’s death was getting closer. No parent should experience this. Health is everyone’s right,” he said.

 

Appreciation to Greek Cypriot officials

Polatli extended his appreciation to President Nicos Anastasiades and “all the Greek Cypriot officials who helped out”.

The plight of Baby Asya has united the Turkish Cypriot community in recent months. A massive campaign tried to raise the money needed, but could not reach the necessary amount.

Efforts in the north are ongoing with a concert on Monday night in support of baby Asia.

After the issue was brought to the attention of the Cyprus government, it was announced that the Republic would pay for Asya’s treatment.

Health Minister Michalis Hadjipantelas announced last Friday that the Republic would undertake the cost of the infant’s treatment. According to Hadjipantelas, health authorities had already placed the order for the drug needed.

According to the Turkish Cypriot press, the issue was brought to the attention of Foreign Affairs Minister Nicos Christodoulides and President Nicos Anastasiades by Sener Elcil, the general secretary of the elementary teachers’ union KTOS.

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 and her treatment is to cost more than €2.5 mln.