In a restaurant. Leo scrutinizes a two-year-old boy in a pram.
- A - the boy shouts provocatively.
- A!- Leo takes the challenge up.
- A!! - shouts back the other boy, louder.
- A!!! - Leo does not give up.
- A!!!! - the boy shouts louder and louder.
- A!!!!! - Leo, limited by his tracheostomic tube, shouts at the top of his voice.
- A!!!!!! - screams back the two-year-old madly.
For a while tense silence falls over the place.
- A B C D E F G !!! - Leo retorts triumphantly, thus terminating the discussion.

Gian Lorenzo Bernini, Model for the Lion on the Four Rivers Fountain

For his first holiday destination Leo chose eastern Poland.
For the simple reason that he has never been there before.
The voyage was a bit of a challenge
as it was the family’s first long-term and long-distance trip
without all of of its members on board.
Just Leo and his Leomom.
Fortunately, the drive through a rainy night, into the unknown,
with a ventilator-connected kid and a faulty sat nav ended up happily.

Leo stayed in a hundred-year-old house with a fireplace,
in which he baked bread and cooked.
He climbed up trees, sat by campfire, played around with with cows,
caught flies and made tree bark boats.
But above all, he spent time with his very good friends :-)

Today Leo had a visitor.
The gentleman came to carry out an interview.
About his condition.
The gent was particularly interested in Leo’s medical equipment.
Tubes, cables, sensors, switches, aspiration (?)….
Leo enthusiastically lead him into his room.
Unassisted, he bagan a demonstration.
He jumped into his bed, removed the speaking valve from his tracheostomy tube
and placed it in the drawer,
then he disconnected the tube from the ventilator,
connected himself to the equipment, switched the pulse oxymeter on,
and, with a sensor in his hand he demonstrated how to use it.
The interviewer was dumbfounded.
Leoparents were proud.
All three were full of admiration for Leo’s capability and self-sufficiency;
convinced, that this was the end of the show and Leo is about to go to sleep.
They were wrong!
The show went on.
Leo took a glass of water form his bedside table to demonstrate how to drink.
Then he showed his bedside lamp...and how to switch it off.

Leofamily took seats in a restaurant.
Suddenly, Leo felt unwell.
He was evidently dehydrated and exhausted.
Clearly, he needed his ambu ventilation
He refused any help….
Then he demonstrated some extraordinary skills….
…in the field of self-resuscitation!!!!
.

(Meanwhile Leoparents went on studying the menu and ordering food :)))

Last weekend, in the very heart of the Disney World (Orlando, Florida)
a conference on CCHS took place, where the show of the film “Our Curse” was on the agenda.
The whole Leofamily was invited but going there together was unfeasible,
Leomom was delegated.

Several dozen people ill with CCHS and their families participated.
The truth is that Ondine strikes with different force.
Some of the people do not look ill at all – they are absolutely independent,
they have finished studies, they work, practice sport,
live alone, have their families, travel.
Unfortunately – not all of them.
Everything depends on the mutation of PHOX2B gene and proper medical care,
the awareness of the people in the health-care system, families and nurses of the sick.
In Poland situation is bad, and the effect of this bad situation can be grave.
By neglect, lack of knowledge,
lack of concentration a person with CCHS can irreversibly lose any chance for normal life.
Leoparents know it from their own experience
and several situations like that from their past history makes them unable to sleep.
Well, lest drop this digression here…

The general message of the Conference was super positive.
The view of several dozen children with CCHS and tracheostomies
diving in a swimming pool (Yes!!!!) warmed cockles of her heart.

The projection of the film itself was a priceless experience.
Right from the first sentence,
the audience reacted with loud laughter and continued to do so now and then.
And they clapped their his during the projection because,
as many poplar told Leomom later: We’ve been there!
Whether they came form the States, Mexico, Israel or Denmark
– they all went through the same inferno.
The film moved them 5, 10, 15 or 20 years back,
when they were sitting on their sofas and repeated the mantra of
"I don't know...I don't know..."
In the end half of the cinema hall were weeping.

And now the most important thing is new discoveries
and recommendations pertinent to CCHS:

1. It was a gossip that the research on Desogester proved to be a dead-end way!!!!
The reason why the research was halted was financial.
It is planned to have the tests re-launched!

2. An alternative, non-invasive method reducing symptoms of CCHS is being developed
– that means the way to trigger one's breathing during sleep!
For a while this research is top secret, results – in about a year!!!

3. It was discovered that the brain of a person with CCHS
can respond to bad saturation of gases in some situations.
Question is: how can one enhance this reaction.

4. It is important to supplement the diet of ill people with magnesium and vitamin B!
Many ill people drink energizers for sportsmen and are very happy with the effect.

5. People suffering form CCHS must drink as much liquids as possible.
This prevents them from drops of blood pressure, which can lead to fainting.

6. Again, a special emphasis was put on the examination of the heart!
Echo and a 72-hour holter once a year is obligatory.
This is especially recommended to people with a mutation over 20/25.
Problems usually begin in teenagers, but you should be wary from the beginning
and insists on your Surgeons have to forced to have these tests performed
– they would rather not recommend them of their own accord.
A heart pacer has saved many a life to date.

7. Leomom has seen how the electrode works with her very eyes.
A certain young lady had it connected to her.

8. A very sympathetic dog participated in the conference.
He takes care of his master and does not permit him to sleep without a mask.
There is a dog training center in NY, where they teach dogs to deal with CCHS,
and the dogs are becoming increasingly popular.

9. Leomom met many adults with CCHS – happy, intelligent, absolutely normal people.
Some of them still had their tracheotomies, however, their speech was absolutely fine.

10. Nobody believed Leomom when she said that nursing care for the whole night is unavailable in Poland.
Why? How can you manage? Unbelievable!

P.S. „Our Curse” (Nasza Kl¹twa) was chosen as the Best of Fest at the Afi Docs Festival in Washington. http://afi.com/afidocs/films/bestoffest.aspx#.U7GWvZSSxyE

As for speaking we are at the stage as such:

The material has been recorded by Madzia LeoLogopedist:)

It is a sheer pleasure to us to boast that the film "Our Curse"
has won two subsequent awards; this time it was at a documentary festival in Sheffield:
The Best Student Film and the Award of the Audience :)
http://sheffdocfest.com/articles/220-2014-award-winners

And the distortion of the (little) cup turned out to be extremely fascinating:)

PS. Subsequent shows of the film are coming: 20 and 22 June in Washington,
within the framework of the AFI DOCS oraz 26 June in Orlando during the CCHS Conference!!!

There is a situation like this:
Person A performs moves in space and by doing so changes relations
between Person B/ event and Person C.
To make it more interesting, anyone can influence the moves of A,
consequently influencing the relationship between B and C.
As an explanation have this:

A - Stef Schuermans 29-year old Belgian man who lives in £ódŸ.
A runner. A climber. A marathon contestant.
The following events have already accrued on his account:
Beskidy Ultra Trail, the "Zamieæ" Ultramarathon, The "Harpagan"
the "Kierat" Marathon… and now there is Leomarathon waiting for him.

B – Operation of the implantation of the diaphragm stimulator.

C - Leo, 3,5-year old boy, living in Warsaw. Individualist, Artist. Gourmand.
The following things have already accrued on his account:
Ondine, ventilator, tracheostomy.
And he wants to get rid of them.

Stef learnt about Leo.
He decided to help him in the best way he can, that is – to run for Leo.
He launched the action RUN FOR LEO.
Every step Stef makes, makes Leo closer to the operation.
Stef has already set off! Yet, before that, he created a website:
http://85.12.32.240/~meneerstef/CharityRun/
We invite you to familiarise yourselves with this excellent initiative !!!!!
Stef – Dank je!!!
runner_1473617i Peter Jansen, Runner

Peter Jansen, Runner

The week passed marked by medical visits.
Phoniatrician, laryngologist, logopedist,
dermatologist, hearing tests, bla bla bla bla…
Leofamily was also supposed to call in to the Children Health Center,
among others and what happened?
They couldn't find their way.
The lost their way twice in the convoluted network of roads.

- Was it this turn, here? Is this the way to the place?
Once, they used to know the way by heat, reaching it with their eyes closed.
Both during a day or at night, or at dawn...
And today they got lost. First time – on their way to the Center,
then – on its premises, too.

This means they FORGOT!
Oh, it's, very well!
And Mister Leo was happy as usual.

- Did you like it there in the Center, Leo?
- Yeps.


Leo is enjoying himself, enacting a silver Opel car, brisking in the street :)

Leomom left the room only for a while.
Just a second.
When she returned, she discovered that someone was sitting at her chair,
drinking form her cup,
typing on her computer!
Oh, boy! What a havoc …