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Rettsyndrome

Elise has fun with PEP

Translation from article – Nov 2018 (Markant magazine 6 – Stijn Rademaker)

‘Lets PEP Elise’, asks helper Dineke van Oorschot of Gemiva-SVG to Elise van den Breevaart (9).

She is a girl with Rett syndrome, a disorder of the brain. This rare syndrome almost exclusively affects girls; about one in ten thousand. Initially nothing can be seen, but after the first few years the head grows less quickly, then there is a standstill, and eventually a gradual decline in development. Typically, there are also respiratory problems.

Van Oorschot speaks the words ‘Lets PEP’ as if a nice game is going to be played. But then she gets a breathing mask put on her face. Is this a nice game? Elise breathes in and out as fast as she can. On the iPad in front of her wheelchair, after a few seconds a giraffe starts moving and making happy sounds. This elicits a response from Elise, as she starts to laugh. This is fun! It encourages her to breathe deeply in and out, again and again. Then she must cough a lot. That’s what it’s all about – to enable her to more easily cough up mucus during the PEP mask therapy. This reduces the chance of respiratory infections. PEP stands for Positive expiratory pressure.