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!!
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.
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.
We have also really been wanted to share with you all about a very special room in this clinic.
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.
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
Posted by October 29, 2013 10 Commentson