More obstacles.
-Leo’s mouth is a mess – says the specialist
From birth, Leo has eaten through a tube.
His sucking reflex is insufficient, weak.
No one knows whether this is the result of long-term intubation?
Sedation? Lack of practice?
Or if it’s a complication of the disease
– so-called esophageal motility problems?
His tongue moves without grace, chaotically.
His cheeks seem to be full of holes.
He starts to choke frequently
-Is there a chance that he will never be able to eat normally?
-There is – says the specialist.

The painstaking process of teaching Leo to eat begins.
It requires immense patience and concentration from Leo.
Success is not guaranteed, as children with CCHS often rely on enteral nutrition.
As if a hole in his neck wasn’t enough,
he may have to have another in his stomach.