Yet, it works.
The tube is finally removed from Leo’s nose
and Leo begins to bottle-feed exclusively!!!
He is increasingly present and smiles more often.

He likes to look at the air vents on the ceiling.
The tiny room is his whole world.

Learning to eat is a nightmare.
Two steps forward, one back.
Sometimes meals can last 3 hours.
Sometimes Leo completely refuses to eat.

Today, a consultation with a neurologist is on the schedule.
MD PhD HAB.* W. visits Leo.
She hits his tiny knee with a hammer, shines a light in his eyes, squeezed tight from crying,
and informs his parents that Leo has hypertonia in his lower limbs.
To the question, “what does that mean in practice?”, she responds more or less as follows:
- It is certain that this child will not develop normally
—either intellectually or physically—
because he undoubtedly experienced extensive hypoxia (lack of oxygen).
Yet his development is the least of his concerns.
I have never in my life seen such a sick child.
Duchenne de Boulogne, Demonstration of the mechanics of facial expression
The doctors from the ward disagree; Leo never experienced hypoxia.

*MD PhD HAB. = doctor habilitated of medical science

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.

When Leomom and Leograndma stand outside Leo’s room,
they see a beautiful sight.
The nurse is washing Leo,
who is not hooked up to a ventilator.
Everything indicates that he will be able to breath independently,
at least in part!!!!

A difficult period of weaning Leo off his sedatives sets in.
Leo has the shakes, is out of touch, he sometimes foams at the mouth,
sweats, and cannot control his eye movements.
He is going through withdrawal.
Like a drug addict.
He has two blood transfusions.

Someone says the word „epilepsy”.
The parents endure this nightmare while waiting
to answer the definitive question:
-- will Leo be able to breathe on his own while awake,
or will he be totally dependent on a ventilator,
24 hours a day,
seven days a week,
365 days a year,
non-stop.
Forever.
Magda Hueckel, Resigned self-portrait X, 2006-2008

Leo catches the rotavirus.

Leo undergoes a tracheostomy.
The operation goes off without any complications.
A hole appears on Leo’s neck with a tube sticking out of it, but now Leo’s face is uncovered.

His right nostril is slightly deformed, a result of his earlier intubation.

"You have been sentenced.
Your life will never be normal again.
Please prepare yourselves that one of you
will have to completely give up your career and social life,
and dedicate yourself to caring for a sick child . . ."
-says Doctor G. with a polite smile on his face,
one leg dangling airily, without a care, crossed over the other.

A fax arrives from Paris.
It is short and merciless.
The tests confirm Congenital Central Hypoventilation Syndrome (CCHS).
A mutation has occurred in Leo’s PHOX2B gene
20/26.

The curse has been cast.
In practice this means
that Leo will never be able to breathe on his own while asleep
and maybe even while awake – time will tell.

That’s not all.
He will undergo a tracheostomy,
which will allow the boy to be connected to a ventilator—a machine,
on which Leo will depend for the rest of his life.

That’s not all.
The disease is linked to various complications.
It’s often accompanied by epilepsy, autonomic nervous system dysfunction,
dysphagia, esophageal motility disorders, abnormal gastric motility, heart beat abnormalities leading to vasovagal syncope, asystole (a state of no cardiac electric activity), incorrect reactions of pupils to light, incidents of excessive sweating, decreased body temperature, impaired thermoregulation, problems with sight and hearing, hyperinsulinism, facial deformities (…)
and neuroblastoma, a very aggressive abdominal cancer.
That’s not all.
The ventilator will continuously and irreversibly harm Leo’s lungs,
shortening their life.

That’s not all.
Not everyone with a tracheotomy is able to speak
The procedure can destroy the vocal chords.
Leo may be mute.

That’s not all.
There are only 200 or so people living with this disease globally.
No one pays attention to orphan diseases.
Medical progress will not help Ondine’s Curse.

That’s not all.
The disease is linked to lower thresholds of pain and fear,
which lead to a heightened risks associated with impulsive behavior.

That’s not all.
Leo can never be without professional care,
he will never be able to go to camp, he won’t be able to snorkle,
travel, sleep under the open sky, go kayaking.
He won’t be able to fall asleep during a boring class
(assuming he even goes to school),
or in a traffic jam on the bus,
or during a movie that’s just a little to long.

Because he will die.