Jonas also suffers from severe muscular hypotonia,
he can’t sit, crawl or walk and he hasn’t found an
alternative way to move around.
He also can’t grab and hold things with his hands
and he can’t speak. He even doesn’t say „easy” words
such as „mummy“ or „daddy“.
And then there are a few more things he was
diagnosed during the last three years:
He has a micro penis and had to undergo a surgery
because of cryptorchidism.
An MRI scan showed that he has brain dysplasia and a
In the last year he developed microcephaly and his
mouth and jaw is very small.
He also suffers from glaucoma on his left eye and he
has a nystagmus.
Despite all these „problems“ Jonas is a happy and
friendly boy and we love him so much! Since the
diagnosis with Cockayne Syndrome 2 in March 2018
we’ve been trying to enjoy every moment with him. He
is our little sunshine, our hero and we hope that CS
doesn’t take him away from us too early.