Jonas was born on June 9th 2014, 5 weeks too early.

Jonas stopped growing in the 30th week of pregnancy and therefore was far too small for his birth age. He only weighed 1.5 kilograms and was 37cm small.

The first two months of his life we had to stay in hospital.

A few days after birth he was diagnosed with cataracts on both eyes and Ichthyosis. In the first 4 weeks he had to undergo 4 surgeries because of the cataracts. He also didn’t really gain weight and we really had feeding problems because he refused drinking.

Nevertheless we could leave hospital when he was two months old. The feeding problems got worse and worse and in the end he only drank when he was sleeping. That’s why he got a PEG tube in October 2015. And he had a fundoplication because of reflux.

At that time he wasn’t feeling really well because he didn’t tolerate tube feeding. He felt sick, started sweating, had stomach cramps, … It took one year to find out that Jonas is allergic to milk protein, chicken protein and many other things. Feeding is okay now most of the time, but he is still very small (at the moment he weighs 8,3kg and is 76cm small).

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 hydrocephalus internus.

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.


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