Video of Luke

Schinzel-Giedion Syndrome
#1

Hi,

My wife and I wanted to share a video of Luke. He's 14 months in the video, today Luke is 16 months old. We also have a blog about Luke that we've kept since his birth and would like to share the blog with other SGS families. The blog is private, so if you would like to view it, please send me a message with your email address and I'll send you an invitation to join the blog.

Here's the video of Lukey (copy and paste this link into your browser):

http://video.google.com/videoplay?docid=-949391013&hl=en

#2

I would love to be able to see this video. My son has Schinzel Giedion, and it would be interesting to see how your son acts. I have been having one heck of a time with his neuro docs. My son has a new seizure type but isn’t picking up on the EEG. Have you had this same issue? My son will stiffin and relax on and off in clusters between 5 to 10 minutes, a few times it lasted an hour. My son is normally stiff and moves his arms and legs often, but this is not what his normal activity is. We just left the hospital wed. with no help to stop this. I don’t accept that this is his “normal” because he’s competely unresponsive. Knowing that your son is 4 gives me hope that my son will live just as long if not longer. I hated it when the docs told me he would have a short life. But their not God! So how would they know! I look forward to talking to you soon. Misty

#3

Hello Green,

It’s nice (and huge) to see that Luke responds to the shaking and starts to shake! This is a beautiful video.
Is this something that he develope recent?

#4

When we stimulate him on a good day, we get this kind of response. Some days are better than others. It also requires a certain amount of effort to engage Luke. He’s always been this way, but you really have to work with him, and almost go in and find him, if that makes any sense. Gentle positive stimulation. Lately he’s been sleeping a lot, but will have a good hour or two a day. I suspect every SGS child is different, depending on the SGS features the child has. Luke has polymicrogyra and agenesis of the corpus callosum, two brain anomalies.

#5

Greenn would it be ok to add Lukes video to my new Schinzel-Giedion syndrome group on facebook? Please let me know if you are ok with this.

#6

Hi Fanona-

My wife and I are not comfortable with you adding the video to facebook, so at this time, it is not okay. Facebook is too public, too open. We have our own private blog for family, friends and other SGS. We are private people and just aren’t ready to put him out into the public domain without our own ability to control it. We also do the same with our 3 year old healthy son, so Luke is no different.

Thanks.

#7

Ok I totally understand and I also have a healthy child that I am equally protective of thanks for your reply. Regards Fiona