Help him catch a breath! Let him be free from the ventilator!

Our 3-year-old-son Alex suffers from an incurable and potentially deadly genetic disorder, congenital central hypoventilation syndrome (CCHS) or Ondine’s curse.

When he falls asleep, he stops breathing, and he needs to be put on a ventilator every evening. Unfortunately, the real curse of that condition is that breathing can stop anytime during the day  –  while playing or watching cartoons. The lack of immediate intervention (putting on a ventilator as quickly as possible) could result in hypoxia, cardiac arrest, and eventually   –  death. 

Alexander requires 24/7 care, including monitoring blood oxygen levels and controlling heart rate. None of us would predict that our baby would be born sick since I had a healthy pregnancy. It wasn’t until Alex was a couple of hours old that the symptoms of the disease appeared. The doctors were concerned, although initially, they hoped it would go away and our son would start to breathe on his own. Unfortunately, the genetic tests proved us wrong…

The doctors decided that the only solution was to insert a tracheostomy tube that connects with a ventilator. Alex was two months at that time. The procedure resulted in his inability to make sounds for many months. Currently, Alex cannot speak despite multiple sessions with speech therapists.

Additionally, Alex requires regular physical therapy and exercises to restore diaphragm function, which is impaired due to a ventilator.  

Surgery to implant a diaphragm nerve will give Alex a new life and allow him to breathe without a ventilator and a tracheostomy tube. Thanks to a diaphragm pacing system that allows breathing in the sleep, Alex will benefit from better, peaceful nights and comfortable living in general. 

However, we cannot afford the cost of the surgery… This is the only chance for our son for a normal life, despite a terrible disease. Your support will bring great hope to our child! 

Please help us raise such an enormous amount of funds! 

Alex’s parents

*The amount to be raised is estimated