We had a very emotional and exhausting week but we are now back from the Nevus Outreach conference in Dallas. We spent three days hearing medical experts speak on congenital nevi (birthmarks like Austin's) and meeting so many wonderful people affected by this condition. We met adults with large birthmarks as well as babies like Austin. Time and again we heard the stories of babies being born with large birthmarks and parents being told that they would not live to be 2 years old, even babies who had no evidence of central nervous system involvement (neurocutaneous melanocytosis- NCM-unfortunately this is what Austin has). Although we did not hear the good news we were hoping for, such as a new treatment or a new study about kids like Austin, that made us only more committed to working together with other families like ours to make our dreams of a cure for NCM a reality. This of course goes along with our other goals of raising awareness generally about NCM, especially in the medical community, and providing more support and information for families affected by NCM and large congenital nevi. One thing we realized is that the extremely small amount of information on the condition is a main limitation. Nevus Outreach is growing very quickly in terms of people affected by large nevi, they had double the amount of people at the conference this year than in 2006, and they are trying valiantly to keep up in terms of resources. We have made a commitment to support this organization and we feel that the support they provide for families is just fantastic and life changing. However, there is a long way to go to achieve our goals. We felt a little discouraged at times because we are dealing with such a time sensitive problem, Austin's health is excellent right now and we pray every day that this remains the case. But the depressing statistics don't give us a lot to hang our hats on as far as an evidence-based reason to hope. But, you all know us, and we are NEVER giving up!! After feeling very discouraged for an hour or two we thought of it as, all these babies born with large nevi were told they weren't going to live- and look at them now as successful, absolutely lovely adults. Why can't the statistics be wrong about Austin too? Then we went back downstairs and met more awesome people and decided that we are going to do everything and anything we can to help achieve these goals. The sad truth is that there is no one out there that's going to do it for us.
Austin had a routine MRI for follow up on July 15. We are going to see Dr. Tomita at Children's Memorial today to get the results. Just praying that there are no changes (or only good ones). I'll update when I have the information.
8 years ago
1 comment:
Welcome back, Jen and thanks for the update. I'm so glad you started this blog, especially if awareness is such an issue. Is there an organization we can donate to, to help?
Keep staying POSITIVE as you are! It's seems simple, but that positive energy really energizes everyone around you, and is good for the mind, body, spirit!! We are thinking of you! (PS - I STILL HAVE AIDEN'S GIFT!)
Post a Comment