Welcome to WylderJames.com…
…a site created to honor Wylder James, a 28 pound warrior who is in a battle with 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.
Despite a disease filled with constant difficulties and challenges that would cause most to simply give up hope, Wylder continues to move and inspire everyone around him as he continues to fight this devastating disease that currently has 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.
The past year has been spent researching potential treatments, building relationships with Bio-Tech companies, scientists, and doctors, and speaking the FDA about getting Wylder approved for an experimental treatment through a Compassionate Use/Expanded Access Investigational New Drug (IND). The plan was to get FDA approval for Wylder to receive rhASM (recombinant human acid sphingomyelinase), the enzyme that he is missing though systemic and direct brain injections in an attempt to arrest the progression of the disease. 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 too is just to dangerous for Wylder. There is a cure out there, somewhere … someday. At this point for Warrior Wylder James we have HOPE … we have hope always.
So 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 recent birth of Wylder Nation; an organization formed to help Wylder and raise awareness for Niemann-Pick Disease, and every hospital stop along way. Be prepared to have your heart touched and to fall in love with all 28 lbs of this courageous little warrior, Wylder James Laffoon.
