Leoparents reach out to numerous clinics that specialize in CCHS
and to the parents of other sick children—in Poland and across the globe.
Everything indicates that, after all, THERE ARE alternatives for Leo.
In Germany, oxygen masks are commonly used instead of a tracheotomy!
In L.A. and Munich, doctors implant diaphragmatic pacemakers.
One girl with CCHS travelled to Tanzania and India relying on her pacermakers!
The method is new and imperfect. The operation is risky, complicated and expensive.
But it exists!
And another thing: clinical trials are set to test the effectiveness of Desogestrel, a hormonal drug, that could maybe (?) help patients breathe independently!
So after all!
Every curse can be lifted!