The story of Noyan
Noyan was born on 21-11-2021 with very very rare genetic disease called SPEG related centronuclear myopathy type 5. He had chylothoraces when he was born which was not related to his genetic condition and had chest drains for 5 months. He has few others problems that make his breathing difficult. He is not able to swallow so he got PEG-J tube for feeding and needs alot of suction.
Now he is able to breath by himself only when he is wide awake but while sleeping he needs bipap. He spent first nine months of his life in the hospital and recently discharged from the hospital.