I am very sorry spriggee that your family also has to travel this very difficult journey. I am not sure how you have tried to contact us I as I haven’t received any messages or I defiantly would have responded. I agree that is helpful to have the support of other families that have been through it, as cougar68 pointed out I have actually been in contact with many other cranio families along the way. I actually mentioned this in the interview as well as some of the wonderful support groups and charities that are involved in bringing awareness to Craniosynostosis but it did not make it to the broadcast. As for inaccurate information, one of the frustrating things about the media is that there is a lot that is edited out or taken out of context. I am not sure if you noticed but all of the quotes in the story are incomplete sentences, with part of the statements left out. For example “those sutures…don’t fuse until your 20 or 30 years old” was in reference to “some of the sutures” not ALL of the sutures. I could go on but I imagine you get the point. And while that may be the case, I still would like to thank KMTR for the effort they made to help bring awareness to such an important cause. I would defiantly like to clarify though that we did not reach out to the media for any kind of support. Our goal for reaching out is purely to help spread awareness about a medical condition that many people have never heard of and that has a major impact on the lives of not only the affected child but also on the entire family.

All I can say is that I know this family personally. I know for a fact that they have done extensive research on Cranio and that you have to keep in mind that there is a lot that gets cut out of the news stories. I can also say that they have found some great support groups on the internet and met some other wonderful Cranio parents. One of which even sat through the surgery with them. I know that this family is more then willing to talk and support others. I am not sure who this Spriggee person is but I can asure you that they would have never not responded to anyone. I am not sure how you are trying to get in contact with the family but to make is sound like they are trying to do this for the media attention is not fair.

Financial help is available for people who must travel for medical care. Several organizations provide free airfare, and others offer small cash grants to offset costs. An online search will reveal the details. It is very helpful to connect with other people who are experiencing similar medical crises, especially if the medical condition is rare, poorly understood; if it requires intensive or prolonged treatment; or if it requires alterations in approaches to education, sports, daily activities, etc. I urge this family to use the internet to make lifelong connections through support groups, mentors, researchers, etc. As their daughter grows, she may develop other health-related concerns that can accompany pediatric craniosynostosis, and having friends with the same condition(s)can make the journey a lot easier. Best of luck!

I do hope she has a fantastic recovery, I don't like the misinformation in the process...

AND the 'facts' ARE NOT CORRECT!!!!!!!!

Our daughter has gone through TWO Craniosynostosis repairs of her right-coronal suture... I've reached out(now, TWICE) to this family without responses... wonder why they reach out to the PUBLIC but don't respond to those who have been through what they're reaching out to the MEDIA for... hmph.