Baby Asya was diagnosed with Type 1 SMA (Spinal Muscular Atrophy) when she was four months old. Babies born with Type 1 SMA have problems with mobility, breathing and feeding and tend not to live beyond 18 months.
Aysa’s father said that the journey towards his daughter receiving the correct treatment had been long and frustrating.
The only known treatment for Type 1 SMA is Zolgensma and costs $US 2.4 million. Asya’s father went about trying to raise money for this one-off dose of gene therapy which studies show slows down the progress of the disease.
He said that he approached large businesses with the hope of getting generous donations, however, he said that they did not appear to be interested. It was only when word of Asya’s illness became more widespread that ordinary people rallied around and organised fund-raising events to raise the money for her treatment.
She was transported to Turkey to receive treatment. Asya, who was not a Turkish citizen, had to apply for citizenship which eventually was granted. The TRNC government said that it would pay for the drugs required. However, Mr Polatlı, said that this was not for Zolgensma but some other treatment.
In despair, he looked to South Cyprus for help. It was owing, largely, to the efforts of the General Secretary of KTOS, the Turkish Cypriot Teachers’ Union Sener Elcil that the South Cyprus government agreed to pay for Zolgensma for Asya.
Aysa was transported by air to Larnaca Airport and then taken to Makarios Hospital where she is receiving physical therapy. Following tests on Asya which were sent to Holland for assessment, Mr Polatlı was asked to sign a paper acknowledging that there could be side-effects from the Zolgensma gene therapy. He said that he was willing to take the risk given it was Asya’s only hope for stemming the progress of this muscle-wasting disease.
He said, “Today, the doctor called us and had us sign a paper. In this paper, we confirm that we are aware of and accept the possible side effects of Zolgensma therapy. Every treatment can have side effects, but we won’t know until we try it. Since we have no other choice, we will try this treatment and accept its possible effects. We are hopeful for Zolgensma. This is the first time we have come this close to treatment, we are excited and happy”.
