Ceylin Balik, who was diagnosed with the rare Hallerman-Streiff syndrome, which is said to result in a one-year life expectancy, is now four years old, but appears to be like a six-month-old baby and is in need of help from doctors to breathe more easily.
Ceylin, who is the only child of Ozdal and Gulten Deniz, was taken to the hospital 15 days after birth with suspicion of eye cataracts. She was diagnosed with the rare Hallerman-Streiff syndrome at the hospital. Ozdal and Gulten have been struggling with this disease for four years and are now feeling hopeless as there seems to be no cure for their child’s illness.
Due to the disease, Ceylin’s father Ozdal moved to Elazig to live with his sister when he became unemployed and could no longer afford to live in Istanbul. Ceylin, who was born weighing 3 kg, was predicted by doctors to live only for a year but has managed to reach the age of four.
However, she has only gained 1 kg in weight over the last 4 years and currently weighs only 4 kg. Ceylin cannot walk, crawl, talk, play with toys, and her body has not developed due to her underdeveloped bone structure. Due to the growth of her internal organs, Ceylin is finding it increasingly difficult to breathe with each passing day.
The Balik family says that doctors have told them that Ceylin will need surgery on her nose or throat to be able to breathe. If she does not have the operation soon, she may end up in the intensive care unit, so they are hoping for help from the hospitals and doctors who can perform the surgery.
Ozdal Balik, Ceylin’s father, said, “When Ceylin was born, doctors gave us a life expectancy of about one year. Ceylin has struggled with her condition and has now reached the age of four. Her living conditions have become more difficult.
She needs surgery, but we cannot do much because we do not have the financial means.” Ceylin’s father also added that they have done a lot of research on her illness but have not found a clear treatment. Her current condition is severe, and they are calling for help and support from hospitals and doctors.