The first Leo's winter was sheerly infernal
– it was wholly devoted to intensive care.
Leo learnt that he was born to suffer from torment.
He was pierced, pricked, examined, tested;
he had a pipe in his nose and his throat, needles in his veins.
His range of vision was restricted to an ugly ceiling and the only source of light,
lightening the dark of his existence, was a hospital fluorescent lamp.

The second winter was better.
It became mercilessly long in a cramped, dark flat.
Everything was falling apart, breaking-down, not working.

The third winter also passed in that flat.
There were a few catastrophes less but, generally,
Leo looked at the world through the window for fear of exposing his tracheostomy to frost,
pneumonia and the repetition of Winter no. 1.

Today is the first day of astronomic spring.
The fourth Leowinter is now gone. It was OK! Experimental, mild.
For the first time Leofamily did not experience the feeling of being imprisoned.
Leo was going for long walks even when the temperature was 10 below zero
and, even, he happened to go outdoors when the temperature was more than 10 below zero.
And he remained healthy! No frozen things. No colds.
The only infection he contracted was the result of his participation in a huge children ball.
But, this is commonplace knowledge – you always pay with indisposition for good parties.

Giuseppe Arcimboldo, Zima, 1573

The ambu bag, dubbed by Leofamily "A Blue Pig"
is a rubber object of the size of an average melon,
finished with a pipe reminiscent of a snout.
It has already saved Leolife several times. For instance, recently.
After a several hours of walking Leo got into the car and broke down like a narcoleptic.
Unfortunately, the ventilator broke down with him, too
– the battery was gone. And in situations like that, the Blue Pig always enters.
Infallible as to date. May it be always so!!!
On the whole way home (in traffic jams) Leomom ventilated Leo manually,
using the Blue Pig.
23 presses per minute during 30 minutes plus.
This makes 700 artificial breaths-in altogether.
And Leo slept patiently.
And Leoparents were also patient.
Because the blue pig is conscientious, accurate and friendly.
And blue!

Wim Delvoye, Carpet pig

For the first two years and a half of Leolife,
traveling by car with him was only possible if two adults participated in it:
a driver, and someone who would monitor Leo
and Leoapparata at the back seat (pulse meter, ventilator, aspirator).
This situation was a huge burden for Leofamily,
strongly curbing their mobility and hindering their logistics.
Luckily, a breaking moment occurred in summer.
Leoparents made an experiment and replaced Leoequipment into the front seat,
while Leo remained at the back, firmly connected to the machines, thought.
Thanks to this, the number of adults in the car was reduced,
because, now, the driver could have an eye on the equipment and Leoparameters.
The trick worked; however, the first experience was extreme.

It turned out that the pulse meter has a special sensor,
detecting the most dangerous road crossings and reacts with alarm on each of such occasions.
Leo has the same sensor.
When ever Leocar (during rush hours) enters Dmowski Roundabout,
Zawisza Square or the crossing of Wołoska and Domaniewska Streets Leo…
is disconnected from his ventilator.
Consequently, when a tram rushes directly onto Leocar from one side,
a huge lorry from the other, a buys from another direction,
from the fourth – a fire engine, and a drunken roughneck in his sports auto form the fifth
– all possible alarms are wailing and the pulse meter informs
that Leo does not breathe and his heart ceased to beat.

The first situation like that was unbearable.
Leomom faced the dilemma:
either she will have her own child asphyxiated or cause a pile-up.
And then enlightenment poured onto her.
Option three.
Leomom told her son calmly:
- Leo, connect yourself to the ventilator and fix the meter on your finger, please.
and Leo obediently followed both of the commands.
May all of the problems will be solved in such a miraculous way from now on!

Anna Reinert, Road 3, 2003

Leo returned from his spring holidays.
He was traveling for the whole week,
visiting relatives and acquaintances scattered all over Poland.
Now and then, he slept in a new, unknown bed (altogether, there were five of them!);
he took bath in an unknown, strange bathtub; he dined at a new, different table;
he ate unknown, exotic dishes (Winner schnitzel); he visited new, unknown places;
he spent time with new, unknown (or known long time ago) people.*

He withstood this avalanche of new experiences with patience and smile.
After all, is it strange that something can be new and strange?

Summing up, Leo has again proved that he has the soul and temper of a traveler.

* Frankly speaking, Leo tolerates the fact that he sits with newly met people at a table
much better than his parents do, who are slightly sociopathic and xenophobic
and will panic whenever they have to find themselves in a situation like that :-)

They have mermaid-like tails, blue skin and scales or hair.
They feel no pain.
They claim they do not live or that their relatives were replaced by their doubles.
They have several limbs. A cyclopean eye in the middle of their foreheads.
They eat metal objects, cigarette butts, hair, and their themselves.
They are allergic to sunlight. Water. Mobile phones. They grow old too quickly.
They never mature. They have absolute memories. Elephant-like legs.
Their lignified hands are reminiscent of twigs.
They faint whenever something enchants them.
They jump whenever something gives them fright.
The fall asleep unexpectedly. They never sleep.
They do not breath in sleep....

People.

People suffering from rare diseases.
Sirenomelia, pica, Cotard syndrome, hipertrichosis, porfiria, argyria, progeria,
epidermodysplasia verruciformis, jumping Frenchmen of Maine syndrome, aquagenic urticaria,
Lesch-Nyhan syndrome, syndactylia, cataplexy, narcolepsy,
Ondine's curse…

More than 6,5 thousand nosological entities altogether.

Rare diseases are difficult to diagnose.
Rare diseases are rarely cured.
Research for cures of rare diseases is rarely carried out.
It is no rarity that a cure of rare diseases is expensive.
Knowledge of rare diseases is rare.
In Poland, 3 million people suffer from rare diseases, which makes almost 7% of our society.
Cases of rare diseases are not rare.
The last day of February is the day of rare diseases.

All the best to all of the Ill people!
All the best, Leo!

Seemingly, he was busy all the time, just playing and not listening....
At any rate, he never listens,
he is always hundred-percent concentrated on what he is doing now.
and even if he listens, he probably does not understand everything, anyway.
So Leoparents talked to each other freely.
- He is fed up with broccoli. Better, give him some dumplings to eat.
- I'll give him six.
- So much!? Give him less.
- Once he ate eight, but usually he eats six.
Well, he will lave some on his plate, if...
- OK, let it be six.

After a dozen or so minutes, Leoparents called Leo for lunch.
He came, he looked at his plate (where his beloved dumplings were sitting),
then – at his parents (with the eye of a wounded deer) and burst out crying.
- What's happened my boy?
- Eight !!!! Not– six!!!!
and he really started to blubber, turning on his heel, refused to eat at all.
No way for negotiations whatsoever.
The argument, that he had just eaten the whole plate of broccoli
and would not be able to eat as much as eight dumplings did not work,
neither did the one that he could get additional two after he had eaten six first,
as his plate would not eight dumplings.

Either eight, or none at all!!!
Nobody is going to ration his food, discussion over.
So, he managed to make things go his way.
He got eight.
and he ate eight.

Gustav Vigeland, Leo

Ladies and Gentlemen!
In a Fauvist-Cubist-like way!

"Mr Leo. Self-Portrait with a Blue Smudge". Drawing, pastel on brown paper.

This fact recurs with astonishing regularity:
the handicapped people and their families "enjoy" consecutive proposals
and motions for bills of law.
These will be proposed and ... suspended.
Sometimes they will be dropped.
Then, they fall down onto people, crushing them.

The last-year's "hit" was the bill to repeal the possibility
to donate 1% of a person's tax to a concrete, natural person.
Had this bill been voted for, it would have been a death sentence to many people
as the truth is that thousands of people are able to survive
and continue living solely thanks to the collection of this 1%.
The bill was suspended because of numerous protests and petitions and,
luckily, finally withdrawn.
Instead, with the new year, a new law was resolved – even "better"!

It pertains to the non-invasive ventilation,
that is ventilation with the use of a machine and mask
and/or diaphragm stimulator (which we plan to have for Leo).
This Law reduces financial support to patients by 30%.
As a result, they lose their right for rehabilitation.
As a recompense, they are entitled to one hour of a professional nurse's care
and one visit of a physician at home per....
(please sit down, ladies and gentlemen, or grasp something firmly)…
one quarter of the year!!!

The truth is that our Health Care System
can squeeze these two hours per quarter deep into their arses,
because nobody needs these two damn two hours.
Additionally, for people suffering from some types of diseases (e.g. SM, SMA),
their being deprived of regular rehabilitation means the accelerated progress of their diseases.

Thus, the above Law can lead to the situation that such people
will not be able to undergo treatment at their homes; consequently,
such people will become residents of hospitals, often at Intensive Care Units.
So, they will take away hospital beds from other patients for some time
(the situation reaping a tragic harvest elsewhere) – but this "some time" will not be long,
as such people will soon die from sepsis, hepatitis,
tuberculosis or any other type "attraction" that every hospital has on the menu these days.

Cindy Sherman. Untitled #175. 1987

Leo is a brainy chap and has long ago figured out that he can keep his parents in check,
and is able to achieve anything he would wish for …
He has perfectly mastered the system of blackmail and manipulation,
rejecting crying and spasmodic seizures for the sake of more refined methodology.

Method one – turning our attention away
– it is applied when Leoparents ask him for something which is not in agreement with his wishes.
Then, he will instantly announce that he needs to go to sleep.

- Are you tired?
- Yes.
- Do you want to go to sleep?
- Yes.
- Shall we connect you to the ventilator?
- Yes.
- Do you find it difficult to breathe?
- Yes.

Method two is even worse – it is applied as a punishment for Leoparents' misbehavior.
Leo gets offended and discretely, sleeps away unnoticed to his room, lies in bed and...
pretends to sleep! Without previously being connected to the ventilator.

Method three – inducing the state of shock in his parents
– it is applied whenever Leoparents dare not to exercise sufficient attention
to their son or do not entertain him with a suitably high level of excitement.
Then Leo lies on the floor motionless and freezes.
He will stuck his glassy eyes onto a distant point,
making his face look blunt, relaxing his muscles... in a word:
he tries to look like a corpse.
And Leoparents have to react. They simply have to.
Because the whole truth is that this entire extravaganza
can really be accompanied by shallower breathing.
Summing up, they asked for trouble themselves,
as they should have demonstrated more empathy
as soon as Leo blackmailed them using traditional methods of three-year olds.

PS. There is also the fourth method. Leo pretends that his limbs become limp.
He uses this method when he is dressed and has made his Leomother die
from a vast myocardial infarct, because she reads blogs and follows two boys with SMA,
and she associates limping limbs with this disease.

Leo is a brave and amicable boy
– he bears all of the fussy measures around him turning a blank eye to all of the disadvantages:
insertion of the catheter into his bronchi,
the washing of the sore place around the hole in his neck,
the insertion of a silicone pipe of the diameter of 5,5 mm down his trachea,
the pumping of air into his lungs, the pouring of saline into them...
He retains his dignity during injections even.
There is only one thing he is not in a position to accept...

Mittens!

Any attempt at enslaving his little hands is tantamount to the attack of hysteria.

To put mittens onto his hands, you must restore to both physical and psychological violence,
and, even if.... he will still remain tough and stubborn and, not caring about the temperature,
he will defend himself till he is blue in the face and, in the majority of cases, he wins the battle...