Wylder James Laffoon was born on May 15, 2009 the most perfect baby boy. He was everything we had ever dreamed of. Diagnosed with Niemann Pick (type A) at 7 months … we learned we had only a few years years to live his lifetime. We did just that. He was laid to rest in Maui in August 2012 filled with love. He made us so proud and inspired us enough to last forever. Wylder will always be our greatest gift.
What he did (in order … well sort of)
Had big brown eyes. Smiled. Rolled over. Melted hearts. Laugh hard. Learned to sit. Said dada once. Got a G-Tube. Traveled to 6 states. Nestled on my shoulder. Vacationed in Maui. Ate one cherry slushy. Had acupuncture. Had Hydrocephalus. Loved watermelon. Had seizures. Smelled like Heaven. Worked the passy. Had feeding therapy. Stopped taking a bottle. Was loving. Never crawled. Gave stink eyes. Left no stone unturned. Inspired a Nation. Had the softest feet. Stopped being able to eat orally. Liked to be startled. Believed in Santa. Taught us to parent in the here and now. Played with toys. Loved shakers. Had 15 surgical procedures. Had us searching for treatments. Inspiring new treatments. Had crazy hair. Had physical therapy. Lost mobility. Cruised in a wizard. Loved books. Had 27 blood transfusions. Flew on a private plan. Had a home nurse. Never went a day without his mom. Was contagious. Was smart. Never spoke. Got over stimulated with toys. Loved bubbles. Defied the odds. Was kind. Reminded us all heath is a gift. Loved books. Lived on IV Fluids for a year. Never stopped smiling. Couldn’t reach. Turned our home into a PICU. Had lots of tubes. Was comfortable. Liked his hands in fists. Was almost 3 feet tall. Taught us what is really important. Love baths. Got held daily. New his dog was smart. Made us smile. Made us proud. Proud of his dad. Loved his mom. Turned three. Held our fingers. Lived without regrets. Held a sparkler. Brought us joy. Taught lessons. Loved music. Was loved. Taught us to say good bye. Went to be with Jesus. Taught us unconditional love. Was laid to rest in Maui. Connected us to the ocean forever . Watches over us. Had a whale named after him. Has a children’s book. Has his parents looking for treatments. And he is just getting started.
He was a warrior.
We will carry on his lessons and legacy forever. We will continue to persevere for a treatment for not only Niemann Pick Disease … but to help many children with rare disease. We will remember always … Wylder James Laffoon. You are loved!
enjoy this video we made of wylder’s amazing life.