It takes a village to raise a child...it takes a nation to raise awareness...

It's hard to find a person out there these days that doesn't have a facebook account, but I know they exist, and I want to reach them! I was introduced to "Parents of Breath Holders" (a facebook group) through another parent who came across this blog.  "Parents of Breath Holders" has been a great place for me to find support during this rough journey with Brayden.  From picking me up when I was having a rough day, to sharing stories and suggestions on where and how to find answers, this group of parents has been the best part of this whole experience.  At the moment there are 77 members in this group, and it makes me wonder how many have not reached this group yet, how many others could benefit from the support I have received.  Turns out I'm not the only one in the group who has felt this way.  In speaking with another mom, she to has often wondered how she could bring awareness, advocate for this poorly misunderstood condition.  And so began our planning!  What if we formed an advocacy group?  At this time, one doesn't exist for this condition.  Where would we start?  How could we reach others the moment they walk out of the emergency room with their child for the first time, and no answers, no where to turn?  We could provide this, but how?  

First things first, I wrote to our State Rep, to see if he could provide me info, or a starting point.  We are in the process of scheduling a meeting.  We have a fact sheet for Breath Holding Spells, provided by one of our moms in the group.  I think this group itself is a great starting point for other parents of Breath Holders, but we need to work together to get the word out there.  Since this is not a localized group, we could reach other parents going through this same experience throughout the country.  Once we get the basics worked out, spreading the word to anyone who needed it would be rather simple.  The difficulty would lie in finding ways to bring Breath Holding Spells to the forefront of medical training.  To get doctors and medical staff a better way of providing info to parents, and to make sure the info provided is accurate, and uniformed.  Increase knowledge, decrease contradicting information to parents regardless of their location. 

My own personal hope for this would be to get studies done to see if any long term effects could be seen as a result of these spells.  I would really like to get the name changed for this condition.  "Breath Holding Spells" makes it sound like these children voluntarily hold their breath, which is not the case.  Even the term "Involuntary Breath Holding Spells" seems to contradict itself.  I'm not sure what it should be called instead, but there's time to think about that.  I hope that with the 77 members we have right now, we can work together to make this work for other parents in our situation.  We know what it was like to leave the doctors office or hospital with only the knowledge that there is no treatment, it will happen again, and that they "should" grow out of it by the age of 6-8.  Our experience could help so many, and I feel there is no reason why we shouldn't!