Wylder James Laffoon was born on May 15, 2009 the most perfect baby boy. He was everything we had ever dreamed of. Diagnosed with a Lysosomal Storage Disorder called Niemann Pick (type A) at 7 months … we learned we had only 3 years to live his lifetime. We did just that. He was laid to rest in Maui in July 2012 filled with love. He made us so proud and inspired us enough to last forever. Wylder will always be our greatest gift and we know that all things are possible because of him. Wylder is our Miracle, our Reminder, our Angel … a little boy with big brown eyes and a shock of dark brown hair. Wylder is a WARRIOR.
Niemann-Pick Type A (NPA) falls under the larger class of diseases known as lysosomal storage diseases and is caused by genetic mutations on the SMPD1 gene on the 11thchromosome, 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.
Because Wylder’s disease, Neimann-Pick type A, is often the most severe of these diseases, solving its puzzles may hold the key to helping many, many children fighting against many different Lysosomal Storage Disorders.