Schinzel-Giedion syndrome group on facebook

Hi everyone I decided to set up a group on facebook for all those affected by sgs please come and join us and share your knowledge and experiences. Just search Schinzel-Giedion syndrome in groups and join. I have kept it a closed group so only members can view content/photos.

Hello Fenona,

I would like to say that I canceld my membership on facebook. It’s because SGS is to personaly for us and we don’t like to share this with the whole world. I hope you don’t mind and I hope that we can continue to chat, ask,… with this forum.
On facebook a lot of people ask to be friend, old friends of school. It’s nice to chat with them but I don’t like that every one can read about our boy. It’s to personanly. Every one who is nearby our heart know about Chiel and I know that they truely love him. This is enough.


I totally understand what you mean. It can be a bit too public on facebook and you dont want to explain things to people who are not important. Yes we can still chat on here. How is Chiel doing? He reminds me a lot of my Hannah.

Thank you for understanding.
Chiel is doing “good”. He eats puree and drinks milk.
The day’s that he has a lot of seizures, he doesn’t eat. Then, he just has milk.
He has a lot of infections, I think he is maybe just one week not on antibiotics.
The infantile spasms come back every 2 weeks, wich means that we increase his anti - epileptics about every 2 weeks but he isn’t yet on his level. So we still can increase. We increase when he had 3 a 4 day’s daily infantile spasms who can last for an hour, even with SOS.
He is in a special school with disabled baby’s, all baby’s with very special needs. They have a playroom, a warm water bed, there own room, a kitchen,… it’s like a house. That’s because we both work and he couldn’t go to a daycare. They had a girl with SGS in the group who lived for 4,5 years. The nurses tell me that Chiel has more force.