News of the gene therapy treatment for 11-month-old baby Asya Polatlı was shared by her aunt Aliye Leach. She said the following:
“Hi everyone, my name is Aliye and I am Asya’s aunty. Our beautiful Asya is suffering with SMA Type 1, known as spinal muscular atrophy. As you can imagine our world was turned upside down when she was diagnosed at the age of 2 months. SMA is a genetic disease which attacks the organs, and Asya has the most severe type. Without treatment Asya may not be able to walk, swallow or breathe – all things we take for granted.
“Asya is currently on a ventilator and has had surgery for a feeding tube to be placed into her stomach, as she keeps choking on her food and saliva. She currently is unable to move her legs and has very little movement in her arms. She requires a very expensive treatment called Zolgensma. The quicker she gets this treatment the better chance she has to have a normal life.
“My brother and his wife live in North Cyprus with Asya and her 3-year-old twin sisters. The treatment is not available in North Cyprus.
“Asya is now 11months old and the South of Cyprus have kindly given Asya the zolgensma treatment she needed – we are very thankful.
“We now need to focus on her rehabilitation. This includes: New wheelchairs for different stages of her life, different types of daily physiotherapy and much more.
“I am asking for your continued help to raise funds and awareness for my niece, so she can get the rehabilitation she needs. We Just want a chance for her to live a normal life as much as possible”.