For Leoparets who seldom walk and always run
having to move around with Leo at their side was a lesson in patience.
Leo never runs.
Leo is a slow and meticulous contemplator of surrounding reality,
moving at the speed as the slowest turtle.
He is a living proof that minus and minus gives plus.
He is never short of time, because his time expands according to his needs.
In his timespace there is always time to analyse everything on his way.
For cars, above all.
A walk along a line of parked cars is a real horror to his parents
who are already fifteen minutes behind their time.

- Look, a Mazda - Leo is delighted;
Mazda has got a logo on the hood,
but it is vital to check if it's got another one at the back.
And on the wheelcaps.
Checking the left side, then the right side.
Yep, there are six logs on a single Mazda.
Centimeters from a Mazda there is a Toyota.

- Look, a Toyota!
It's got a logo on the hood, no logo on the sides or at the back.
Toyota has got two logos and Leo's family is already 20 minutes behind the time.
Next, there is a Fiat, and a few more car models.
They'd better have their logos on,
otherwise Leo will have to be lifted up to peek inside and check the logos on the steering wheels.
Other, elements of the urban landscape are equally fascinating and worhty of noticing:
dead leaves, dogs, pigeons, pigeon droppings, manholes, and pavement patterns.
Leofamily is moving at the speed of five meters per hour.
This generates a 24 -hour delay per week.

If you are familiar with any teleportation techniques -
please share them with us.

Lewis Carrol Biały królik, Alicja w krainie czarów

PS. „Our Curse" was awarded as the best documentary of Raindance Festival in London.
The schedule of October film screenings:

Leofamily reports being back home.
The flight brought Leo lots of joy.
Basel was sunny and charming, the festival was inspiring, moving,
full of great people, the trip on a whole was super nice!

And most importantly,
Leo has once again proven that you can travel with CCHS, even by air.
Well, and Leofamily returned with another statuette.
The film has received the "Denk an mich" foundation award.

The foundation Denk an mich is very pleased to reward a film that deals with daily issues,
impairment, disability, leisure and recreation in a special way.
This film invites us to follow young parents a part way through their life with their Child
- on a path, where the word 'recovery' gets an entirely new and existential meaning.
And in the end the film effects what has always been difficult
in the context of disability and impairment.
It forces us to take a close look.

After a 24-hour nightmare the family got persimmon to board the plane.
The sight of happy Leo compensated the stress.

Summing it all up:
It should not have happened.
Wasted a day and missed the festival opening
where Leo was supposed to be a special guest.
Unnecessary stress.
But maybe this case will teach air carrieries to be more careful in the future,
so that other travellers are spared such stress.
We made it and this is what matters.
The wonderful action undertaken to support Leofamily in crisis was a great success.
The facebook commotion was a great success
- Swiss Air Facebook fanpage was bombarded with posts expressing outrage.

The media (radio, television, press) reaction was a great success.
It is a shame that we had to go through this ordeal.
It's a shame that Swiss dealt with the situation only after a media intervention.
It's a shame that matters could't be handled otherwise.
The official version of events currently presented by Swiss is shameful, too.
According to it the permission was granted after we offered
to change the equipment to be then on board.
The ventilator was the main problem, not the pulse oximeter.
One day the ventilator was the problem, the other day it was not.

And now the long list of credentials for those who enabled us to fly.
Special thanks to Małgosia K., Andzia Z., Ania T.
(Franek's mom), Malwina N., Agnieszka O., Mike U.
and all the journalists who voiced our case or were willing to help.
Thanks to LOT Airlines for the readiness to take us on board.
Thanks to the Facebook community - it was brilliant.

P.S. We are convinced that the Swiss spokeswoman had a lousy day, just as we did.

Leo knew since June.
He knew that he would fly by plane in September, in the group of five.
Leo, Leomom, Leodad, Aga, and number five, the dog.
The dog would fly, too.

Life was revolving around this flight.
Stories were told.
Leo heard that he would see clouds and mountains form above
and the houses would look very small,
and his luggage would be checked in.
And that the plane has got wheels.

The reason for the commotion was the invitation
for Leo and his family to take part on Look&Roll Film Festival.
The festival organisers care for special needs guests.
They fight for equal their rights and are against discrimination.
They show that disabled people can fly, play and enjoy life.
The Festival organiser have invited Leo's entire family for a big celebration.

Leofamily had started to work on the procedures enabling Leo to travel by plane in June.
Tons of paperwork, dozens of phone calls.
The formal requirements have been met.
All of them.
The permission has been granted.
Swiss Air has consented.

September began with the final countdown.
All of Leo's toy cars changed into planes.
Leo would wake up every morning counting days to come.
Five, four, three, two.
Yesterday he woke up showing one finger.
One day.
We are off tomorrow.

Unfortunately, at 13.30, 20 hours before the departure
a mail from the Aircarrier shuttered our dreams.
Dear Sir, Dear Madam, unfortunately we cannot take you on board.
We have changed our minds.
Please do not aim so high.
People with ventilators should stay at home.
Sincerely and coldly.
We are so sorry.

How to share this news with a child?
You are not flying, my dear, although we have promised.
You are handicapped, that’s your fate.
It is not your first or last disappointment, face it.

But don't worry, We'll swing in the playground instead.
It's gonna a be cool.

Just to make things clear:
you can travel by plane with a ventilator and medical equipment.
Leo's family knows a lot of people who did.
CCHS- sufferers among them.
There are no medical or technical contraindications.

Peter Bruegel, Landscape with the Fall of Icarus

Please include a signed and stamped original of the document

Please bring the original,
the one that you sent somewhere last year.

The jelly turned into a boy, the boy - into jelly.
The bad weekend turned into a good one.
And it's not going to change. Ever.
Leo has recovered and spent his free time in the best possible way.
With his friends. One of those numerous encounters is particularly worth mentioning.
A visit to Kuba, who shared the hospital emergency unit with Leo,
who also has a traheostomic tube and a ventilator for the night.
Kuba, apparently also had a thing with Ondine.
When the boys first met they were in a miserable state - confined to their beds,
tangled with cables, drugged, and their future was unclear.
Today they are such a pretty sight.

A sinusoidal weekend.
Leo would wake up cheerful,
ready to play and move around, even run,
only to turn into a violet shaky jelly capable only of staying in bed.
The violet shaky jelly took a regenerative nap and rose up as a happy and sweaty boy,
ready to play and move around happily, who would then, again, turn into a jelly.
And so on and so forth.
The weekend isn’t over yet.

Jacques-Laurent-Agasse, Ondine, from the Leofamily's virtual collection

There were plans for a stay an idyllic house in the countryside, fresh air and sun.
Instead, there is Paracetamol, inhalations, fever and syrups.
And sun, yes, there is sun
In spite of the illness and a huge crisis we took advantage of the sun.
Thanks to the irreplaceable and beloved art of photography.
Ladies and Gentlemen!
Here comes Leocyanotype.
Experiment number one :)
P.S. for those unfamiliar with photography:
Cyanotype is one of the oldest imaging techniques.
The photographic image is obtained by exposing a surface,
covered with special chemicals, to sunlight.

Ps. Dla niewtajemniczonych: cyjanotypia jest jedną z najstarszych technik powielania obrazu.
Obraz fotograficzny uzyskuje się naświetlająć specjalnie przygotowaną powierzchnię
promieniami słonecznymi.

PRESCHOOL, DAY 8

- Could you please look at Leo, something is not quite right with him,
said the preschool teacher to Leomom.
Leomom ran up to the room to see him leaning over his unfinished lunch.
He did not eat and his lips were purple.

- Are you feeling bad?
- Yep - he whispered.
Leomom carried him out of the room.
She got the pulse oximeter out and switched it on.
Leo's hands were icy cold.
His eyes were glazed.
His face was grey.
The readings on the pulse oximeter were well below the norm.
Leomom started resusctitation.
Leo began to faint away.
From then on the events took speed.
Leomom carriend him to another room to lay him down.
The preschool teacher ran to the car to fetch the ventilator,
One teacher brought blankets, another one - febrifugals.
Leo turned icy cold and began to tremble, his body turned…
(exactly, what colour was it?)...transparent greyish-blue.
His eyes were completely absent.
Leomom called Leodad.
Then she dialled the home ventilation emergency number.

- Call an ambulance - advised the doctor on the other side of the line.

Ondine, from the Leofamily's virtual collection

Ambulance arrived.
Almost unconscious Leo lay down, connected to the ventilator.
Trembling.
He was terrified, and the colour of his face was getting stranger and stranger.
The oxigen saturation reading went up and down madly.
Leo was taken into the ambulance
and it dashed off with the siren on into a well-known place.
The emergency unit at Children's Memorial Health Institute.
Leomom ventilated him with the help of ambu bag.
The doctor connected him to the oxygen unit.
Leo fell asleep.
The saturation began to stabilise.

- Once I transported a boy with a similar condition - said the life-saver.
And it turned out that it was the very same boy.
Leo reached the clinic in a stable condition.
With a perfect skin colour, perfect oxygen saturation readings and tolerable temperature.
The Emergency Unit.
Familiar faces.
Familiar smell.

The fit was diagnosed as a sudden onset of an infection.
Leo didn't have to stay at the emergency unit.
He did not disappear behind the stell door on the first floor.
Those who have been there know exactly what it means.
Leo returned home in his family car.
He is recovering.

P.S. The preschool team had their true baptism of fire.
They passed the test with flying colours. Thank you!!!!!!

After the first week of preschool education
Leo went to the countryside for a well-deserved holiday.
Cow milking, tractor rides, fruit and mushroom picking,
cooking, tree climbing were among the numerous countryside attractions.
What matters is that the idea originated just hours before departure,
which proves that the ventilator and spontaneous decisions match.