On July 20th, 2012 at the age of 3, Wylder James took his last breath here on earth, passing from Niemann-Pick Type A, but not without leaving behind lessons of unconditional love, and providing perspective on how to make a lasting impact on the world by paving the way to help others.
Niemann-Pick Type A (NPA) falls under a larger class of diseases known as lysosomal storage diseases and is caused by genetic mutations on the SMPD1 gene of the 11th chromosome, and causes a malfunction or absence of an enzyme called Acid Sphingomyelinase (ASM), which is responsible for metabolizing a special lipid called Sphingomyelin. If ASM is not functioning properly or is absent, sphingomyelin cannot be metabolized properly and accumulates within the cells of major organs such as the liver, spleen, lungs, and brain, eventually causing organ failure and death by age 2.
As part of a promise made to their son, Steven and Shannon have started the Wylder Nation Foundation to help provide hope to a much needed rare and neglected disease community, and ultimately reduce the number of children's lives taken by lysosomal storage diseases. The Foundation seeks to provide what Wylder's parents tried so hard to create for their WARRIOR...an option for treatment. After all, options provide hope, and hope is unstoppable.
The Wylder Nation Foundation and the Translational Genomics Research Institute (TGen) have joined forces to create Wylder's Research Project, a genomics initiative focused on utilizing the technological advances of Next Generation Sequencing (NGS) to gain new knowledge on potential therapeutic targets for this devastating disease and similar Lysosomal Storage Diseases, and work diligently to translate these new discoveries into possible treatments that can be brought to the bedside.
Your support is greatly appreciated as every donation counts regardless of the amount, and positions us one-step closer to saving lives.
To support Wylder's Research Project Fund Please click on the donate button located on this page to make a donation to this fund.