Steven, Koa and I were at the National Niemann Pick Conference in San Francisco last weekend (I guess it was really 2 weekends ago already). It was a BIT easier then last year’s conference emotionally, because it wasn’t our first, and because we were surrounded by a few other Niemann Pick type A families. That being said, it was a bit trickier and I felt less involved because I was being momma to sweetest baby Koa. I wish I had had more time to chat with some of the amazing families that we became so close with the year before that showed us so much love and support. I also wish I was able to snuggle on some of the rainbow babies other than my lovely. There were at least four babies there that were not born last year, God is good.
It was really important to Steven and I to attend this year’s conference on the heels of our first gala. We wanted to not only see friends, be up to date on what the NNPDF is working on for the disease … but to make it very clear that we are an addition to the NNPDF, not a threat or competitor. Just different in our missions, which is a good thing, making us both complementary and important to families. Steven even spoke at one of the meetings at the conference on the research WNFoundation doing to keep the NPA & B families in the loop. He did awesome!!
The highlight was definitely meeting and spending quality time with the other NPA families. Friends. It is amazing to me the instant bond Steven and I have felt with every family we have met. It truly is the family you wish you didn’t have to have, but are so very very very grateful you do. We love them all and their babies.
Levi Gershkowitz ~ please check out his amazing Living in the Light of Rare and Orphan Diseases project.
They are the most loving and wonderful families. Truly. I just wish I had taken more photos.
This is the first time I have ever met another child with Niemann Pick A. Garrett is so far defying the odds, and we hope he keeps it up!! I desperately was striving to be Garrett’s favorite, but with Steven and his golf t’s and whiffle balls and Josh (Jakes dad) with his magic tricks, I stood no chance. I did have baby Koa in my back pock though, who Garret loved and Koa loved right back. It was so special to meet him and spend quality time with his amazing parents.
After this years conference, meeting garrett, thinking of Jacob and many more, it affirmed in my mind the importance of the WNFoundation’s mission and how we must keep going. Collaboration with foundations like the NNPDF is so important and change is necessary.
I left the conference a bit early to spend some time with my San Fran family. Driving there I had a complete melt down missing my Wylder so, but seeing my families shinning faces was just the best. They were the EXACT medicine I needed for the next few days. I love them so. More on our San Fran family trip in a later blog.
That’s all for tonight. Extra tired these days so I am off to bed. But not without sharing three amazing blog posts must reads with you.
I love you and I miss you Wylder. Thank you for bringing more families into our lives that we now feel we could not live without. Keep Garrett safe and strong, will you? We love him and his wonderful parents. Keep guiding us, we are listening. See you in our dreams, and in every sunset with your little brother. xoxo
A San Fransisco Treat
Posted by August 11, 2014 6 Commentson