WN Rare Disease Day 2013

 Wylder Nation was ready for the day!! 

they had to cool down with some ice cream because they were so firey in there WN t's

they had to cool down with some ice cream because they were so firey in there WN t’s

more cousins for wylder!

more cousins for wylder!

Thank you all for joining the movement yesterday and raising so much awareness for our Niemann Pick and Rare Disease families.  The pictures that were all over face book, twitter, instagram and that filled our inbox were just incredible … it really did feel like so many people were uniting on this one day for so many incredible children and there families .  Rare disease is so sad and so hard, but Steven and I know with every ounce of our being that change is happening, and that by joining forces and sticking together and pushing our medical community … change is in the near future, and change is HOPE.  Treatments. Cures. Forever’s. 

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Here are some pictures of what we did here in the valley to spread some love “Warrior Style”.  Snuggling these kiddos and chatting with there beautiful families made the day so beautiful and filled us with so much happiness.  Phoenix Children’s Hospital HOPE KIDS got a WN special delivery …

look at how my new little friend is snuggling me.  LOVE

look at how my new little friend is snuggling me. LOVE

sweetest face

sweetest face

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i promise she likes me (tee hee).  what a little darling Christina is.

i promise she likes me (tee hee). what a little darling Christina is.

a little small talk :)

a little small talk :)

 

gran visited the kiddos too

gran visited the kiddos too

Here is a photo of what each kiddo got.  One of my favortie things is to see the kiddos sweet little expression and BIG eyes when they learn that the little boy in the book is my son … they think it is so cool that he has his own book.  I love to see them all light up as more and more people “meet” Wylder and read his lessons.   

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Next was Scottsdale Shae Hospital Visit.  This was my first time back to this hospital.  We were snuggled and hugged with so much warmth and love from the staff, it sort of felt like home.  I have missed those sweet friendly faces  They are such beautiful people that really care about the kids in the community and they miss our wylder too.  I was reminded how amazing this facility really is and how much they helped us in our journey with Wylder when hospital visits were something we were always trying to avoid, but they were inevitable.  This became such a safe space for our family where we knew we could get the support and help we could not provide at home for Wylder, but they always respected our every wish and new HOME SWEET HOME was always our top priority.  

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Steven and I ended our evening at TGen.  We were surrounded by families that are the essence of hope and there sweetest little children!  The kiddos even got to go do a “Strawberry extraction” with the TGEN scientist while the parents stayed back to chat, meet and greet and learn about the latest happenings of the facility.  We learned that on average approximately 5% of neruological disorders were being “diagnosed” by neurologist by a physical exam and test after test after test for these kiddos.  After only just a few months TGen has gotten that percentage to 50% diagnosis’ with 1 blood test (genome sequencing)!  It is incredible what they are doing.  Steven and I were then able to meet and chat with new and old friends.  One woman in the room said it was the “first time she did not feel alone” … her son is 19. WOW.  What a reminder that on a day that is so bitter sweet, it is so important that we all support one another and we persevere to make a difference.

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Here are some other rare disease day happenings …

NNPDF News letter (click here)

Little Quinn and her family are raising a tone of awareness.  Be prepared to fall more in LOVE with little QUinny.  Here she is in the news (click here)

Phil and the Running for Rare DIsease Team Rare Disease Relay Photo Gallery (click here)

The day was absolutely bitter sweet.  I am so grateful that we have the opportunity to do something and be a part of this movement and be a part of something BIGGER.  I believe it is parents that are the ones that move mountains, because when you children are in the battle of there lives … you are there voice and the voice of change.  It was also a bitter day yesterday, filled with cranki-ness, as I am reminded as I make buttons of our sweet Wylder the WHY .. behind why we are a part of this movement and how much we miss our baby.  We felt you around us all day Wylder, as we do every day and we thank you for giving us the strength and love to go back to these hospitals and share your lessons and love.  You are so loved, you are so missed and you are our happily ever after.  Unity is HOPE.  Much love and hope always.  xoxo

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Comments

  1. Shannon, I am so humbled by what you do everyday, in the name of LOVE, not only for Sweet Wylder, but for all of these precious children and their families. Wylder is, and always will be, an angel of love and hope for so many. So happy to see Gran, too!! Sending her hugs!

    • Mommy and Daddy says:

      Leslie, you always find the most beautiful words. You are so right, anything and everything we do moving forward really is in the name of love. No matter how hard, wonderful, little, or big it may be … it is because we learned and loved the BEST (littest Wylder). Thanks for always commenting and showing your support. xoxo

  2. Oh Shannon, what a light you guys and Wylder are. I love your giving spirit and all you did yesterday in Wylder’s name and out of love. Thank you for being such an inspiration! we love you guys and miss Wylder so much. xoxo, Chelsea

    • Mommy and Daddy says:

      Thank you Chelseas, it was a day filled with so many mixed emotions .. but we feel grateful as a family to give back (even if it is just in a small way for now). Thank you for always being the support you have been. We love you all and cannot wait for the day we get to SQQQUUUEEEZZEEE ya! xoxo

  3. Tracey McFadden says:

    I agree with Leslie, we are all humbled by everything that you and Steven do!

    • Mommy and Daddy says:

      Thank you Tracey, thank you. As I said in my response to Leslie … we certainly learned from the BEST!! xoxo

  4. Cathy Johnson says:

    Your capacity for love is amazing, Shannon! I love the way you see each day as an opportunity to do good. You are a true Warrior! xoxoxo

    • Mommy and Daddy says:

      Thank you Cathy, this is such an amazing compliment. As you know, Steven and I certainly learned from the best. The days are so ver hard and giving back to the community is the only thing that feels right, right now. xoxo

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