Will Leo ever recover from CCHS?
No one has ever recovered yet, maybe Leo will be the first one ;-)
How long do people with CCHS live?
The disorder is hopefully not getting worse. If Leo is ventilated properly, he might have a very long (and happy) life.
Will he always have a tracheotomy?
NO!!! Older children use facial masks, instead of a tracheotomy. And there is also option of implanting a breathing pacer - unfortunately this operation is expensive and not covered by Polish health insurance. And there is also ongoing research on medical treatment.
How much does it cost to implant a breathing pacer?
Around 100 000 EUR :-/
Will Leo be able to speak with tracheotomy?
Yes, his vocal cords were not destroyed. He's already started saying basic words, they are still a bit distorted but he's working on improving that ;-)
Will Leo be able to go to school?
Yes! Currently he goes to pre-school. Unfortunately, someone has to be there always with him, either one of us or a nurse, which we hire.
Did you got in touch with other hospitals abroad?
Yes, we are in close contact with other hospitals and also CCHS Family Network in US.
Is the situation of these children abroad different that in Poland?
In many countries the health insurance cover the cost of nurse for each night. Thanks to that the parents don't have to wake up 20 times each night to connect him to a venilator.
Did you ever think about alternative medicine?
:-] We are open to any ideas!
Is it inherited?
It can be, but in our case - no. We just had a bad luck.
How is Leo doing?
He is doing great!