Leo is standing by the sink, washing his hands and talking to himself.
Nosy Leomom perks up her ears.
- Coffee, tea, milk, water, juice - says Leo in one breath, clearly trying to list beverages.
He falls silent for a moment and gets lost in thought, trying to make sure he has a full list.
- Pee - he adds and bursts out laughing

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After a quick trip down the red carpet,
Leoparents land back at home and immediately return to their daily routine:
preschool, physical therapy, speech therapy, psychomotor rehabilitation,
doctors visits, and interrupted sleep.

LA became a memory.
A very nice one.

Yet something has changed.
There's a light at the end of the tunnel.
Hope is stirring.
Impossible things are once again possible.
A huge fundraising effort to support research for a cure is ramping up.

We're working out the details. There's a lot to do
There's no doubt there will be a cure; the only question is when.
So we need a catalyst.
Details to come.
planning trips.

And in hoping for an improvement,
Leo is planning trips and studying maps non-stop.

 

They did it.
They walked the red carpet.
Leoparents!

It was incredibly fun.
A wonderful adventure. Exotic.
We thank everyone who was rooting for us.
We are overjoyed that our film reached so many people
and that the world learned about CCHS.
And that so many people reached out with warmth and kind words.
We receive dozens of emails daily.
New members have joined the CCHS network,
including the first member from Africa!!!
As promised, we are setting out to fundraise in support of research for CCHS
and we are asking for our support. Please help us spread the word.
It’s time to find a cure and lift the curse!
http://www.cchsnetwork.org/donate

And now… time for the most important award!
The Oscar goes to…. LEO!!!!!!!

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P.S. We would also like to thank the Warsaw Film School,
Marysia Pułaska (snort, snort, we love you!!!!),
the Polish Film Institute, as well as
Tomek Ossoliński i Moons Varsovie,
Anna Orska, Loft 37, By Insomnia,
Nenukko, Ania Poniewierska i of course
Mnishka i Cargo by Owee <3

PS1. Congratulations to Pawel Pawlikowski and the whole "Ida" crew!!


- Leo, I'm begging you, please pick up your toys. How many times do I have to ask you?
- Ten
- Pick up your toys, pick up your toys, pick up your toys, pick up your toys,
pick up your toys, pick up your toys, pick up your toys,
pick up your toys, pick up your toys, pick up your toys.

And he did it. Deals are sacred.

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In case anyone was curious about what has been happening with Leofamily
in the week before their trip, we are happy to inform you that:

- Leo’s pulseox cord won’t stay connected, so its alarm is going off 10-15 times per night.
- Leo has developed an allergy and is itching all over.
- Leodad caught an infection, was out of commission for two days
and too weak to do anything other than sleep.
- Leomom was also indisposed and out of commission for a day.
She could only rest and wait for it to pass, as she could not even sleep.
- Leodad’s computer crashed.
- Leodad fixed his computer.
- Leodad’s computer crashed again.
- Leomom dropped her cell on the concrete floor
and the touchscreen shattered into a spider web of cracks.
The phone lost 30% of its functionality and has started sending out texts
that are not entirely in accordance with Leomom’s will.
- Someone stole Leomom’s car. After Leomom spent a panicked hour looking for it,
the car was conveniently dropped off on another level of the parking garage. ;)

And so on.

On top of this, Leomom once again has been travelling the same road
that she used to travel daily to see her son
when he was in the hospital in a medically induced coma.
This time, however, her destination is not the Children’s Memorial Health Institute,
rather the nearby dressmakers’ workshop where she has to be fitted for her dress for…
eh, the Oscars.
Life writes the most unbelievable screenplays.

Meanwhile, Leo studies the map. While he can point out Hollywood,
other directions interest him more. For example, the south pole:
- Do dragons live in Antarctica?, he asks suddenly.
- I don’t think so… It’s too cold for dragons in Antarctica,
responds Leomom, hesitating. She can’t ever remember hearing about polar dragons before.
Leo bursts out laughing.
- Too cold for dragons! – he keeps repeating for at least the next half hour,
choking with laughter, until it starts to amuse Leomom, too.
Just because she hasn’t heard of them, and that it’s rather unlikely,
doesn’t mean they don’t exist.tumblr_m5ek9tKUSv1r4hqt2o1_1280 Uroboros

And there it is! Available for everyone!
Thanks to New York Times :)
"Our Curse" is available online at:
http://www.nytimes.com/2015/02/02/opinion/our-curse.html

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Still from the film "Our Curse"

We're sharing good news!
Considering all the commotion with "Our curse",
we are together with the CCHS Network planning a great crowdfunding campaign,
aiming to support the research on CCHS treatment.
The research is conducted at several laboratories
and the main problem and setback is a constant lack of funds.

Because of that, the plan is as follows:
- reach the greatest number of people possible
- gather as much cash as possible
- finance the research
Whenever we know anything more, we'll inform you :)
Any support is appreciated!

A treatment will be discovered.
Leoparents know that!

PS1 And now about culture.
Theatre fans are used to traveling all around the country looking for good productions.
They spend hours on the train to hunt down something good.
They ride from Warsaw to Bydgoszcz, from Krakow to Poznan, from Wałbrzych to Bielsko...
And this is what happened past Wednesday: two enthusiast traveled almost 450km
just to see the best (in their opinion) actor on the stage.
The show was only 15 minutes long, unfortunately it's hard to get an objective review,
since the enthusiasts were Leograndma and Leograndpa, the theatre was a kindergarten,
the actor was Mr Leo, and the show was prepared for Grandmother's and Grandfather's Day.
Groupies claim that the trip was worth it.

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We’d like to comment on yesterday’s events :)
The truth is that Leoparents - grim pessimists did not expect this to happen.
They had plans for the afternoon and a well-discussed list of arguments
why not being Oscar nominees is a good thing.

Nonetheless, they joined a group of film-makers, potential nominees,
who gathered at Polish Institute of Film Art to hear the latest Oscar news.
The voice on the phone broadcast the news straight from Hollywood.
First they heard about the nomination for Joanna. The crowd went berserk.
And then Booom! like a bolt out of the blue.

- The other film was nominated, too !!!!!!
- someone shouted.
- Which film?
- Leoparents looked at each other.
- „Our Curse”!!!!!! . „Our Curse" is among the nominees!!!!

They can’t remember hat happened next.
The world swirled around them. It hasn’t stopped yet. Everything went surreal.

In the eye of this commotion there is a small boy with a blue toy BMW in his hand.
He is not excited by the perspective of stepping on the red carpet,
or dinner with Meryl Streep, nor the fact that the documentary about him,
shot with an amateur camera by his parents made it to the history of Polish cinema.

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Photo by Marcin Kułakowski, PISF

P.S. Thank you for congratulations. Congratulations to all the nominees!!!!!!!

When Leo is a behaving and humble at the dentist’s
(or any other doctor) Leoparens wink at each other.
Their looks express satisfaction with their son:
he is clever, brave, and mature enough to accept the unavoidable.

If, however, Leo gets hysterical at the steps of the dentist’s,
(or any other doctor) weeps and screams in terror,
if he rebels against the visit with all fours, his parents wink, too.
This time their looks express delight at their son’s strength,
firmness of character, persistence and uncompromising nature.

When Leo falls victim to their manipulations
they are delighted to see him so trustful and lovable,
when he is not taken in by their tricks
- they are proud with his wit and are convinced
that he won’t be easily conned in life.

Besides they love to discuss his hair colour.
It is a recurring subject of endless discussion,
it has been discussed hundreds of times.
According to Leoparents the colour of Leo’s hair is absolutely unique,
striking, fabulous and perfect.

Recently something strange happened…
When watching Leo in a group of other kids,
Leo’s parents noticed that roughly eighty percent of his peers share the the same hair colour.
The unpleasant constatation lasted only seconds.
After a while they concluded that it was just an illusion because,
after all, his hair colour is perfect, unique and original.

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The end of the year was the time of our annual Ondine Summit.
Because of the limited number of participants the event proceedings were altered.
The summit was attended by Leo and Emi with their moms, who,
instead of sitting at home, went for a walk along the coast.
It was frosty and beautiful.
The kids fed birds and their moms talked…about holiday plans,
air flights, possibilities of travelling with kids,
preschools, schools,
It was just like any regular family walk along the coast.

Ondine was left behind.

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The walk was topped with hot chocolate and even hotter kisses.
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