Antional Health Fund…
Provides refunds, pays, helps, insures, protects,
takes care of its patients and never stops its efforts to make their lives easier…
The last spectacular success of the Fund is providing new sources
of entertainment to the parents of little patients
from the home ventilation programme.
In their spare time (which they have more than plenty!)
they are forced to fill in the tables.
Everyday; or more like couple of times a day.
Meticulously.
In the first section they have to put the date (DD.MM.YYYY).
In the second one: the time of connection to the ventilator.
Into the third: the time of disconnection from the ventilator.
Then, in the fourth section they have to put a legible signature.
Name and Surname (or the name and two surnames).
As the child is being connected to the ventilator several times a day,
the date is rewritten respective amount of times.
The signature should also be put several times. LEGIBLY!
On top of that, Leoparents sign papers:
after each doctor’s visit (once a week),
nurse visit (two times a week),
and physiotherapy (two times a week).
Unfortunately, the Fund has no money for refunding speech therapy,
nurse’s extra hours,
(in Germany CCHS patients CCHS have a right to a nurse
for 12 hours every night, in Poland – 4 hours… a week)
and many more indispensable medical equipment,
because the costs of storing and filing all the papers are going up,
so are the salaries of people who are employed
to check if all the tables are filled in correctly.

It seems that the range of Leo’s sleep disorders is getting bigger.
A perfect full moon outside the window and sleeping Leo keeps sitting up,
and then lies down again.
Sits up and lies down…
Naturally, it usually ends up with disconnection from the ventilator
and alarms going off,
which force the tired and constantly sleepy Leoparents to be wide awake…


Leo crawls better and more eagerly.
Without asking anybody’s permission, he sets out for different trips
– to the bathroom, bedroom,
and most willingly to the kitchen (probably in search for food).
He’s been spending a lot of time observing a boy who lives in the oven…


Today, at 5.40 am Pola passed away.
For a couple of weeks, she and Leo were in the same hospital room.
They fought for their breath together.
She was two days older than him.
Leofamily will always remember Pola.


Gustave Doré Paradiso

Hospital smell washed out.
Leo in good form.
He forgave!
Everything's ok.

He came back home.
In an ambulance, with a signal… as always…
Paramedics blocked the staircase with the stretchers completely.
The neighbours waited patiently and with curiosity.
He came back different – smelling of hospital,
gloomy, distrustful, betrayed and sleepy.
He has traces of ICU all over his body:
four red electrode marks on his little arm,
purple blood spot in his groins,
a chafe on his wrist left by a plastic number…


Maurizio Cattelan "Horse"

Our sty at ICU is getting longer…
We don’t know why.
And if you don’t know why, it’s probably about money.
The rule is that you cannot spend less than three days in a hospital.
But it is also impossible to do the examinations recommended in CCHS
– holter test and stomach ultrasonography.

– Why is it impossible?

– Because it’s impossible.

So the stay here is futile.

The weather reflects our moods.



Luckily, nurse aunties and Dr Jo entertain Leo when Leoparents are not around.

CMHI again. Registration again. Papers again.
Something is missing again. Jammed elevator again.
Again the labyrinth of grim corridors filled with suffering.
Again the sick children. Again the heartbroken parents.
Again the grey door of ICU on the first floor. The waiting again.
The uncertainty again. The familiar smell of disinfection liquid.
Again the impertinences „The doctor is not in, I don’t know if he’s coming,
and You, Ms, don’t stroll around here”.
Again the same room. Just a different bed…
In a hospital, Leo automatically looks more sick, in a cage,
ringed, incapacitated, numbered (7023/12), monitored…

He takes it worse every time. He doesn’t smile at everybody anymore.
He cries whenever he sees a doctor approaching…

Tomorrow Leo is going to the hospital for a night.

Just for a check-up.
To check on the level of carbon dioxide during Leo’s sleep…


Leo’s speech neuropathologist gazes at Leo with curiosity.

- Maybe it’s time to grate his apple a bit thicker? – he asked Leoparents. 

Leo gives him a look of surprise.

Leoparents shared a baffled look.

Next, they take out their phone and show Leodoctor a video from two weeks ago.
Leodoctor looks at the screen… and gives a shout of enchantment.

- So it seems we don’t need to learn how to eat!
It’s high time to learn how to speak! – He decides.