WELCOME TO WYLDERJAMES.COM …
a site created to honor Wylder James, a 35 pound WARRIOR who battled an extremely rare and fatal lysosomal storage Disease called Niemann-Pick Type A. Wylder’s Journey is one that redefines courage, embraces challenges, provides hope, and demonstrates the power of the human spirit.
Wylder’s time here on earth came to an end on July 20, 2012, at the age of three. In his own way he won his battle against Niemann Pick A disease by spending his time here with us as a teacher. The disease that stole his body could not take away the lessons or the love he exemplified. Despite a disease filled with constant difficulties and challenges that would cause most to simply give up hope, Wylder continued to move and inspire everyone around him as he fought this devastating disease that currently offers no treatment or cure. His fighting spirit has become a contagious disease itself, and has inspired and motivated those closest to him to never give up hope and join him in this fight against Niemann-Pick Disease forever. Wylder’s life was full of love, family, memories and laughter. He taught us to live in the here and now and every day to its fullest.
The past three years has been spent researching potential treatments, building relationships with Bio-Tech companies, scientists, and doctors, and speaking the FDA about potentially getting Wylder approved for an experimental treatment through a Compassionate Use/Expanded Access Investigational New Drug (IND). We were hoping this would by time until a more permanent cure such as gene therapy was available for clinical trials for NPA. After a second trip to New York’s Mount Sinai we determined this is just too dangerous for our Warrior. There is a cure out there, somewhere … someday … and we will persevere until we find one, with Wylder’s spirit guiding us along the way. Because of Wylder Nation, never been done before research is being done now, so that one day a family that receives the devastating news they have a child with NPA will have options … HOPE. Wylder Nation will join forces so that one child’s life will continue to change many. http://wyldernation.org/
We have also written a children’s book for our “Warrior Baby” that remind us all how to be deeply committed to love. They are beautiful heartwarming stories and ways to share Wylder’s messages in your own homes. http://shoptogive.wylderjames.com/ Wylder we love you and we promise to remember always.
Buckle up and hold on as you are about to enter into an emotional journey that will take you from the day Wylder was born on May 15th 2009, to the birth of Wylder Nation, to Wylder being laid to rest with the ALOHA spirit and every loving moment along way. Be prepared to have your heart touched and to fall in love with all 35 lbs of this courageous little WARRIOR, Wylder James Laffoon.
WylderJames.com its own affiliation and is my personal voice and lessons from Wylder how I see it as his momma. What I write on here are my thoughts and opinions about my experience and not necessarily a reflection of Wylder Nation Foundation as a non-profit organization.