A San Fransisco Treat

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.

Koa in attack mode at the airport

Koa in attack mode at the airport

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.

Our families all together

Our families all together

Levi Gershkowitz ~ please check out his amazing  Living in the Light of Rare and Orphan Diseases project. 

Garrett and Koa

Garrett and Koa

Kelly and Koa

Kelly and Koa

I got a little snuggle with Kelly

I got a little snuggle with Kelly (Jakes little sis)

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.

Baseball fun

Baseball fun

Garrett watching magic

Garrett watching magic

Garrett holding Koa

Garrett holding Koa

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.

Cousins!!

Cousins!!

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.

Link to Sarah’s Blog – about her experience at the conference

Link to Eileen’s Blog – A mother’s whole heart. Every word she types is so true.

Link to Chelsea’s Blog – About the WNFoundation Gala

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

Angels with candles at the conference.  so loved and so very missed

Angels with candles at the conference. so loved and so very missed

Comments

  1. Cathy Johnson says:

    Shannon – I am loving seeing the posts about the Conference, especially the pictures of Koa gettinghis charm on and your snuggles. What a blessing this event is to all of the families involved. One of the biggest takeaways from the WNF Gala for me was learning more about the lack of networking and communication in our healthcare system. I so admire all you and Steven are doing through WNF to create the collaborations that will speed up the research and development process in the fight against lysosomal storage diseases. I look forward to continuing to work with WNF, Quinn Madeleine, Inc., and all of the other awesome organizations in the quest for treatments and cures. xoxoxo

    • Mommy and Daddy says:

      It was so fun to see all the little ones together Cathy, it really was a blessing. Thank you so much for your kind words about the gala, we are excited to see the change in the near future. xoxo

  2. It was so great to see you and Steven again, and meet Koa. He is so sweet! Hopefully next year we will have toddlers running around!

    • Mommy and Daddy says:

      You too Jill, although next year Shelby is a must. Can’t wait to see how the little ones grow and change each year. xoxo

  3. Sarah Brooks says:

    We feel the exact same way and are still talking about how special it was to finally meet you all. I loved watching Garrett with his new toys and I definitely think Steven has his little buddy wrapped around his finger with the wiffle ball bat and golf green. Josh and I can’t wait to attend next year’s WNF gala. Just so in awe of all that you and Steven are doing to move research and awareness forward for NPD, as well as other lysosomal storage diseases. Hugs to that sweet boy of yours!

    • Mommy and Daddy says:

      Us too Sarah. We can’t wait to have you at the gala next year, and baby #3. Thank you for the sweet words, we know change is happening because of all our little ones. Wish it wasn’t this way, but cannot wait for the day a diagnosis is not what it was to our families. Arms around you guys. Can’t wait to hear when your little darling make her arrival. Thinking of you xoxo

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