November 28, 2013 – Ondine in Dutch

After the first screening of “Our Curse” in Amsterdam, Leoparents were approached by a couple.
- Our son, D., has Ondine too. He’s Leo’s age.
It was hard to talk at first, as both sides had loads of chaotic questions. It was soon clear that we needed to set up a separate meeting.
So D-Parents invited Leoparents to their home! And so this way, Leoparents got a chance to meet D., and learn how life with Ondine looks like in Holland.
And here is a deep sigh.
Eh…
First of all, D. has a nurse to watch over him EVERY night.
The same Nurse gets up with him every morning and takes him to a special preschool, where D. is under qualified care until 6 pm…
D-Parents sleep well, they are calm and nothing restricts their ability to work.
They are free to choose their doctor, nurse, speech therapist, physiotherapist, ventilator and pulse oxymeter brand, and loads of other things…
D. has a specialised doctor who supervises everything.
D.’s Parents do not spend hours on the internet and on the phone to gain any kind of information or make an appointment.
Everything around D. is adjusted to his and his parents’ needs…
D. has two ventilators; one small mobile one with a changeable battery, and a stationary one with air humidifier, two sucking devices – a portable and stationary one; two pulse oxymeters and a capnography module.
Everything is covered by insurance…
Moreover, the state covered a specialist nursing course for all family members who wanted to get involved in taking care of D.
And so on, and so forth…
D-Parents could not believe that in Poland there is no system of daily help
– How can you possibly live like that!?
– Umm... well…. You can’t, but there is no choice… – Leoparents answered.
And it’s hardly any consolation that it’s even worse in China* than it is in Poland.
And just to add on a side, D. has turned out to be a cheerful, talkative boy.
He’s 3,5 and speaks great (daily speech therapy sessions, refunded by the state).
What made us feel better was the information that a sudden progress happened right after D. turned four.
Leoparents are very happy they met D-Family, it is a very precious connection!