Resources & Support (from his caringbridge)

I often get questions from people about my son's condition from people who obviously are masters at google and wikipedia. So, for all who may be searching for answers, here are some better resources and supports

The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!

Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.

Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)

Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!

And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.

Hope you all have a great day and thanks for visiting!