Wylder’s Research Fund

As I watch the movie the Lorax last night (which rocks by the way), the main quote from the movie made me think of all of you. “Unless someone like you care a whole awful lot, nothing is going to get better it’s not”.

Wylder’s research fund raffle was a BIG success!!  We raised $3,000 for the fund and every penny is going towards research being done right now!  They have already found out very valuable information … like the fact the there is much more fatty storage in the lymphatic system than originally suspected with Niemann Pick Type A.  We are hopefully we will learn more and more over the next 6 weeks all thanks to our sweetest little man and all of you, we are making a difference.  So proud!  We also received $350 from Temple Bar and Grill … Wylder’s research fund is on the move.

Steven and I do not want to stop there.  We are hopefully to continue with Wylde’s research fund in our future and maybe even team up for some pilot studies.  We just learned of two new little ones recently diagnosed with NPA … it is hitting to close to home.  With Wylder continuing to guid us … we will persevere and have hope always.

The Niemann Pick Disease Foundation is also continuing to persevere, research and give families support.  And from a donor/friends, that would like to remain anonymous … the foundation received a $5,000 donation on behalf of our WARRIOR.  We thank you from the bottom of  our hearts.  YOU are all making a difference and we are forever grateful!!!!!!!

For now, while Wylder’s research fund is just getting up and running we have a simple favor to ask of all of you in the meantime.  GET PREGENETICALLY TESTED for Niemann Pick!  It is as simple as a blood draw.  Don’t let any doctor talk you out of it because you are not of a “certain decent”  … and yes, it is very rare … but it is here and happening.  Test yourself while in the  family planning stage.  Test yourself even if you are done having kids … they could still be carriers … keep those grand kids safe.  Aunt’s, uncles, friends … everyone with kids anywhere in your life … a simple test is so easy.  Please get tested … for us.  It really is as simple as a blood draw and they only need a small amount … here is a link for your doctors to know what type of tube to put it in ect.

https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os3h_U2cv30B_IwN_f3MDA88APyM_byN_Q3cfA30_j_zcVP2CbEdFAPxk0ls!/dl2/d1/L0lDU0lKSWdrbUEhIS9JRFJBQUlpQ2dBek15cXchL1lCSkoxTkExTkk1MC01RncvN19PNUNKTVFPMjBPTzcwMElQTjJOSzJPMUdENS9JX19fXzE!/?/CM_PORTLET=PC_7_O5CJMQO20OO700IPN2NK2O1GD5_WCM&WCM_GLOBAL_CONTEXT=/wps/wcm/connect/IntGeneticsLib/integratedgenetics/home/our+services/reproductive+testing/niemann-pick-disease-type-a-testing

Most doctors will know just what to order you … and if they question you or ask WHY .. say it is because of a most beautiful little boy names Wylder James!

Comments

  1. Wow! That’s just amazing news!! I’m so happy the research fund is off to a warrior-sized successful start! We will continue to support, hope, pray, persevere and fight as part of Sweet Wylder’s legacy and for all kiddos that need our help. Hugs and love to both you and Steven xoxoxox

  2. Adriana Klas says:

    I cannot believe all that was raised for Wylder’s research fund!!! That is so wonderful and amazing! :) :) :) Thinking of you guys and sending love! XOXO

  3. Such wondeful news on the research fund! Also thank you for sharing the link. Hopefully the more people ask about it the more information doctors will have!

  4. Cathy Johnson says:

    Oh wow, Shannon! What a wonderful beginning to Wylder’s next chapter! I love it, Leslie – “warrior-sized”! Perfect. I received my copy of Warrior Baby yesterday, Shannon. What a beautiful story – I can’t wait to share it with my grandbabies!

  5. Yeah!!! that is so much money for Wylder’s research fund-I can’t wait to find out what all they discover! I cried when I read there were two more NPA babies, I have had this dream lately that no other children would be diagnosed, I know its silly, but I was hoping to never hear of another NPA baby again:( my heart is breaking for them. sending you and steven love. xoxo

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