Finally A START!!!

[Leighasmom]

check out this link cranio was on the news!

http://abclocal.go.com/wabc/video?id=7309047

[Sophia's_mom]

That's great!! I wonder where that aired, was it local for you Mel?

[Gretchen]

Wow!

[Leighasmom]

Aired in New York last night. NEW YORK!!! What a huge city to promote awareness. Not local for little Nebraskan me but I'm inspired to write my hometown news people now...lol ;-) doubt podunk Nebraska will be too fast to react but this was awesome to see.

[Sophia's_mom]

Aired in New York last night. NEW YORK!!! What a huge city to promote awareness. Not local for little Nebraskan me but I'm inspired to write my hometown news people now...lol ;-) doubt podunk Nebraska will be too fast to react but this was awesome to see.

I just emailed the link to my local ABC station saying I would love to see that or something similar air in our community. Maybe Sophie will be on TV?

[Leighasmom]

sent an email with the link to my ABC station too. I think I should send one to each station see if they feel competive against ABC...lol

[Leighasmom]

Lol NBC and CBS now emailed....hmmm Oprah next? Inside Edition done to lol...I'm back on my podium girls lmao

[fitmomof2ae]

Did you notice the Father had sagittal cranio too??? He looked great! He didn't appear to have any syndromes either. What are the chances are of having a single suture cranio child when you have cranio without a syndrome? I'm just wondering this for our children's sake? I don't know that Dr's know, but I thought I'd put it out there...

[Leighasmom]

Did you notice the Father had sagittal cranio too??? He looked great! He didn't appear to have any syndromes either. What are the chances are of having a single suture cranio child when you have cranio without a syndrome? I'm just wondering this for our children's sake? I don't know that Dr's know, but I thought I'd put it out there...

He looked really good I thought. It was my understanding even without a syndrome that once cranio appears in a child then they have a 50/50 chance of passing it on. I might be wrong but thats what I always thought.

[angeleka]

OK I have been inspired......
I just sent an email to the Doctor that does medical segments on our local NBC station. I told him our story, about CK and CAPPS, and even added the link to Andrew's video. What the heck, it can't hurt to try to get the word out around here.
He works out of the same hospital as our pedi and does news segments on the side. I am not holding my breath for a response, but it was worth a shot.

[angeleka]

He looked really good I thought. It was my understanding even without a syndrome that once cranio appears in a child then they have a 50/50 chance of passing it on. I might be wrong but thats what I always thought.


We were told by our geneticist that the likelihood of passing it on if it is not syndrome related is the same as getting it the first time. The risk is no different to our kid's children as it was if they were not cranio kids. Just one docs opinion though.

[Leighasmom]

Well already made it through the first screening process with our local news station. Recieved an email from then saying they were sending it onto their research/news story team. I too gave them a link to our video in my email.

Angi its possible you're right I know their was some debate on this issue 8 yrs ago. Never sure what they think just hope for more research.

[momof2withcranio]

That is amazing. I cant believe it. It is definetely a start.