WNFoundation Mission Statement
Wylder Nation Foundation is determined to improve the lives of children diagnosed with Lysosomal Storage Disorders and provide hope by accelerating the discovery and development of treatment options.
Wylder Nation Foundation is a 501(c)3 Non-profit organization
Why Wylder Nation Foundation Exists
Wylder Nation Foundation is a warrior community of families, scientists and doctors who are passionate about connecting with each other and sharing hope with those affected by childhood Lysosomal Storage disorders. We canot tell the story of who we are, however, without sharing the story of a very special little boy, Wylder James Laffoon.
Wylder was born May 15, 2009, a beautiful, perfect baby boy with a shock of dark hair and big, brown eyes. One month later, the first warning sign appeared. Wylder developed terrible reflux. Three months later, tests showed his liver enzymes were elevated, but doctors believed Wylder had a virus. At seven months old, upon his parents’ insistence, Wylder’s doctors performed a liver biopsy. The result was shattering for the family: Wylder was born with a very rare genetic disorder called Niemann-Pick Disease. Worse to hear that fateful January day was that Wylder has the most aggressive form of Niemann Pick, Type A (NPA).
Neimann Pick Type A is one of more than 50 identified lysosomal storage diseases. In his short lifetime, Wylder the Warrior inspired thousands of people to live like a warrior, embracing each day as an opportunity to make a difference for others, and to recognize that each moment in life is precious.
Wylder’s parents, Shannon and Steven, began Wylder Nation as a way to fight for Wylder’s life. For two years, they tirelessly researched what little information was available, and reached out to doctors, scientists, biotech companies and the FDA, and anyone else they could find who was willing to dedicate their resources to study diseases that affect a precious few children and adults.
As their network grew and glimmers of optimism were on the horizon, they realized that the time would come when their fight would no longer be for Wylder, but for others. Today, through his legacy, Wylder Nation Foundation is continuing the warrior fight to advance research, provide funding for medical trials, encourage dialogue among experts from different fields and encourage hope to the families who are often silently feeling the pain of helplessly watching a child suffer the effects of a lysosomal storage disease.
At Wylder Nation, we are warriors. We are determined to reduce the number of children’s lives taken by lysosomal storage disorders. Won’t you join us?