What took us to New York in the first place?

....besides a plane full of annoyed passengers who I am certain shared the following sentiment.... "It would have been a great flight had it not been for the screaming baby!" Yep, I was that mom...you know, the one with the screaming baby!

We were there for the Vascular Birthmarks Conference hosted by the Vascular Birthmarks Foundation. This amazing organization hosts a conference each year for medical experts, patients, and their families. The morning was full of presentations by medical professionals who are experts in the field of "all things birthmark". There were hemangioma experts, vascular surgeons, dermatologists, oncologists, interventional radiologists, a neurosurgeon who specializes in Sturge Weber Syndrome.....the list goes on and on. I just took it all in, realizing that this conference was beneficial to me for both personal and professional reasons. I feel that God has a plan for me to be an advocate for patients and their families who may be born with a vascular birthmark. I look forward to the day when I can refer a patient to the proper medical experts.....so many patients fall through the cracks. This opportunity to serve others is one of the "blessings" that has come from Greer's birthmark journey.

It can be very frustrating to have a child with a rare condition. Friends and pediatricians and local specialists may give you a multitude of false (usually outdated) information, simply due to ignorance. I don't really fault them. It's like any specialty....new advances and findings all the time. I believe that it is the responsibility of a primary care giver to know when to refer, and to not be afraid to refer when they don't know what they are dealing with. The common sentiment is that "I wish they had done something sooner." Greer was blessed to have referals and treatments very early on, but that doesn't mean there haven't been questions along the way. There have been times when I have had to bite my tongue when someone says something that is outdated or no longer the standard of care for these patients (and I am not just talking about Greer's situation). You want the best care for your child. You get accused of being an "internet junky" who is trying to diagnose/treat their own kid. You may get labeled as crazy and over reactive, but in the midst of all that, you realize that you DO know what you are talking about. You get your hands on the latest research, the latest findings from the experts (of which there are only a handful), and they are telling you things that GREATLY conflict with what your local practitioners are telling you. I have met many families with these frustrating circumstances.

So what do you think happens when a bunch of "crazy" parents and adults living with vascular birthmarks and associated syndromes gather with the experts at a conference in NYC?  Those experts THANK US for pushing their research. Yep...that is what they did at this conference. They thanked us for being strong advocates, for asking questions, for searching the proper websites, for joining the support groups, and for sending them emails and pictures. They thanked us for BLOGGING! They thanked us for posting our stories on YOUTUBE! It was such awesome affirmation. Best of all....it made me not feel so crazy after all!!!

If you have a chance, visit this website.  I met so many wonderful people that day, and even got to speak with some who I have gotten to know over the past few months via the internet.  One of those families has gone to unbelieveable lengths to get the best possible treatment for their little girl.  You simply won't believe it!!!   Through it they found the amazing Dr. Waner. What he did for Kaylynn can only be described as a miracle, and you must see (and read) her story to believe it!  What makes it even more unbelievable is the battle her mother had to fight right in the middle of it all.....she was diagnosed with breast cancer after little Kaylynn was born.  I will be praying for their continued healing, and ask you to join me.     

Thanks to all those who made this conference possible.  Thank you to those "expert" caregivers who care enough to make a difference in the lives of soooo many people, and thanks be to God for miracles!