Dear Leoblog Readers we have a big, big request of you – please help Leo!
It was precisely 3 years ago (21.01.2011) when Leo was diagnosed with a rare,
incurable and potentially lethal genetic disease:
Congenital Central Hyperventilation Syndrome (CCHS),
colloquially called Ondine's Curse.
Leo – whenever he falls asleep – stops breathing.
Four days after the Leodiagnosis, he went through the operation of tracheotomy.
– He will have tracheostomy till the end of his life, his parents heard.
Whenever Leo falls asleep he must be connected to a ventilator.
The ventilator pumps air into his lungs which, however, destroys them.
The hole in his neck is a big hindrance to the development of his speech
and increases his susceptibility to infections.
The tracheostomy pipe needs cleaning several (sometimes more than a dozen) times a day.
To do so, you need a special device, operating like a vacuum-cleaner,
which must always be at hand near Leo.
You push a sterile catheter inside this pipe as far down as you feel resistance,
that is to the place where the trachea splits into bronchi.
It is unpleasant, and for those who see it for the first time – shocking.
It makes Leo nauseating.
Moreover, trachea must not become wet, which makes bathing,
swimming and even taking a shower complicated.
You cannot go outdoors with it when the frost is strong.
You should change the dressing around the trachesotomy everyday.
You need to change the pipe once a month.
The nights with tracheo and ventilator are real nightmares
– the alarms are wailing several times per night.
There is a chance to have an electrode implanted into Leo's diaphragm:
Thanks to this, it will be possible to close the Leotracheo
– the boy will regain the possibility of free, unlimited speech,
the risk of infections will drop, and, on top of that
– he will have a detail removed from his body,
which now signals that he is ill and stigmatizes him.
A large and heavy ventilator will be swapped onto a small radio emitter.
You change batteries in the emitter once in a few weeks; you charge the ventilator every few hours,
several times a day. The air, instead of being pumped will be sucked/ drawn
(in into Leolungs in a natural, physiological way)
thanks to the stimulating electrode – this means that Leolungs will finally have some rest!!!
Summing up: Leolife will become easier and Leoparents will finally be able to sleeeep!!!!!!!
Unfortunately, this operation is not performed in Poland.
Leoparents have contacted a clinic in Uppsala, Sweden.
A doctor from that clinic will do the operation.
The cost of the equipment,
the operation itself and transport is approximately 100 hundred euro!(data from April 2013).
Therefore we ask you to donate 1% of you tax to Leo:
Particular aim: Leo Hueckel-Œliwiñski 36/H
(please find details here: http://www.leoblog.pl/1-podatku/)
Leo is under the care of the "S³oneczko" Foundation,
where he has his own sub-account to which you can make donations.
The account number is: 89 8944 0003 0000 2088 2000 0010
(For transfers from abroad, please add:
IBAN: PL 89 8944 0003 0000 2088 2000 0010, SWIFT: GBW CPL PP)
and the annotation: "Darowizna na rzecz/ Donation for Leo Hueckel-Œliwiñskiego 36/H"
(please find details here: http://www.leoblog.pl/darowizny/)
Data of the Foundation:
Fundacja Pomocy Osobom Niepe³nosprawnym "Słoneczko",
Stawnica 33, 77-400 Z³otów www.fundacja-sloneczko.pl
We will spent the collected money on:
– the cost of the operation itself and related expenditure
– medical care (Leo must be regularly tested by a cardiologist, radiologist, audiologist, neurologist, ophthalmologist, logopedist, foniatrician, etc.);
– tests and examinations (holter, USG, hearing tests, etc.);
– rehabilitation (his muscle tension is lowered),
– logopediac training,
– therapy in the domain of sensory integration,
– purchase/ maintenance of equipment (e.g. capnometer, a device monitoring one's breathing),
– purchase of disposable sensors for the pulse meter, dressings for the tracheostoma,
medications, non-allergic adhesive plaster, etc.;
– nursing care – Leo can only live with the assistance of a qualified nurse
(additionally, it must be a nurse specializing in ICU care).
Three years of our hard work and care for Leo's development yielded excellent results.
Leo is exceptionally cheerful, wise and happy child despite initial prognoses made for him.
He is now beginning to speak, he can perfectly count, he is learning to read!
He has managed to overcome many a barrier but there is still a long way ahead of him.
WHY/ AND HOW ARE WE ASKING FOR HELP!
We also kindly ask you to spread information about Leo,
publicize it on Facebook/ Twitter, Goggle+ etc.,
add links to our blog, tell friends and... any other way whatsoever!!!
And the most important thing for today:
Best wishes to all Grandmothers on heir day!
Especially to Granny K, Granny E, and Granny R:)