Patient Voice

We give voice, We do science







“Hi everyone, I’m Marisa and this is Daiana, my very special baby girl.
Daiana has CDKL5 and she is a very rare baby.
She’s very sweaty now because she drank milk, and every time she does, she gets sweaty, but she loves milk so much that she can’t do without.
She’s 9 months and a half, and she’s a very very very affectionate child. She loves to be cuddled and mostly to get kisses, and she needs a lot of attention and a lot of time,
During the week she does a lot of things, so many!
She goes to the swimming pool to learn “acquaticity”
And then physiotherapy twice a week, and now she will start music therapy because she tried, and she really liked it.
A big kiss to all the kids and all the families.”