C4RCD Clinic

I cannot believe I am just writing you all about this now.  I have been wanting to write, but the days feel so short balancing work, getting the foundation off the ground, pregnancy, missing Wylder and oh, life. 

The TGen Center for Rare Childhood Disorder is officially open!!

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It looks beautiful and will serve children battling rare neglected diseases.  It truly is the first of its kind and will give scientist (at TGen) the opportunity to genome sequenced kiddos being personally seen in the clinic.  A real opportunity to get quicker diagnosis and compare the science to what is happening in the real  lives of these families everyday vs. what appears on a piece of paper or you read about in a book. 

https://www.tgen.org/research/center-for-rare-childhood-disorders.aspx

The grand opening/ribbon cutting event was just a few weeks ago and it went off with a  bang.  There was media coverage, inspiring stories, and amazing speakers that included Surgeon General Rich Carmona, MD, Phoenix Mayor Greg Stanton and Arizona House Speaker Andy Tobin.  Dr. Narayanan and his beautiful wife Chitra sat amongst the panel of families speaking and there were very few dry eyes about this impact of this clinic.  There is no better man for this job than Dr N, and it was more evident than ever on this ribbon cutting day.    

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We have also really been wanted to share with you all about a very special room in this clinic. 

Wylder’s room!! 

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Thanks to our amazing silent partners and friends for life Wylder has his very own room in this clinic amongst some other very special children.  That means everyday kids and their families visiting will see and “meet” Wylder and feel his Warrior Spirit.  I get choked up every time I think about it and am so grateful we are a small part of this amazing clinic.  The room of course has a red polka dotted wall (don’t talk to Steven, my mom or I about the polka dots, tee hee … it is a sensitive subject, but worth all the work for sure, tee hee).  It is just a beautiful room and we hope it makes the kids visiting very happy.  There are no words to thank those who made this room possible. 

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The tile project in the lobby ROCK!! Can you all find your tiles Wylder Nation?22

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This clinic WILL save lives.  Not every life, but it will save children’s lives and get families answers they have longed for.  It is such a special place and a reminder of the power of science.  Thank you for allowing us to be a small piece of this TGen, we believe everything you are doing for children with rare disease is remarkable and we are behind you 100%. 

Here is a clip on the media coverage on CBS  http://www.kpho.com/story/23700405/tgen-opens-center-fro-rare-childhood-disorders

Wylder, we know you will spread so much happiness to the kids visiting you in your room.  May you help to provide them comfort on those impossible days.  We know that all things are possible because of you.  We love and miss you and will see you in our dreams. xoox

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Comments

  1. Shannon and Steven……I have tears of joy to see this come to completion–WOW!!! It’s sooo beautiful. The WylderNation NY Banner is ready. I’ll message you on FB. xoxoxox

    • Mommy and Daddy says:

      We cannot wait to get the banner Leslie!! Thank you for ALL you do, and for taking the time to make that special piece … wow. We love WN NY! Thank you! xoxo

  2. Cathy Johnson says:

    Incredible! Fantastic! Phenomenal! Amazing! Joyous! Wyldly Wonderful!!!! Just like you two. This is just the best news! Thanks SO much for sharing! xoxoxoxoxo

  3. Shannon,

    Do you know how a child gets an appointment at TGen? My almost 2 year old son has “something” that has never been diagnosed. There is a long, long, long history that I won’t bore you with but the next step is going to be a liver biopsy at Phoenix Children’s. I actually found your blog because Dr. Aleck analyzed his first metabolic screening and when I googled Dr. Aleck, your blog came up! I’m just worried that we still won’t have an answer after the biopsy and I’m wondering if TGen would be helpful at all. Oh I wish we could just meet for coffee and talk because it is such a complicated story.

  4. Bristelle says:

    The clinic is so amazing and Wylder’s room is beautiful! So proud for you guys and that you have been able to turn an impossible life situation into something that will make things possible for so many others. You are truly remarkable and so inspiring! I know Wylder is so very proud of his mommy and daddy and all the things that have been accomplished because of him.

    Love,
    Bristelle

    • Mommy and Daddy says:

      Thank you so much for your kind words Bristelle! I am so glad you loved his room at the clinic, it is SO SO special. xoxo

  5. Shannon! Wylder’s room brought me to tears. I actually have wondered about that polka dot room before and how hard it was for you to do that pattern! You are amazing and I am glad you had some helpers:) This clinic is just beautiful, I love the hot air balloons and the kites. What a beautiful place for children to come to! Did you design all the rooms? Can we see more pics?
    love, Chelsea

    • Mommy and Daddy says:

      It really is so incredibly special Chelsea. I need to take more picts of each room, they are sooo cute. I realize just how bad I am about bringing my camera and taking picts. I was lucky enough to get to help with all the rooms in the clinic, but it really was a community effort and soooo many hands jumped in. The star room is for little Mylee who’s momma we have come to love and it is twinkle twinkle little star … beautiful. I will get more picts up for sure. When you bring the family to AZ we will take you down there. FYI: never paint polka dots (tee hee) xoxo

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