Journey List

-          May 2009 – Wylder James is born
-          August 2009 – 1st hospital stay lasts 5 days with no answer as to why Wylder’s liver enzymes are so elevated
-          September 2009 – Wylder has several ultrasounds and blood draws to monitor liver function
-          November 2009 – Wylder has his 1st MRI looking for a tumor due to extremely high protein levels…Results are negative
-          December 2009 – Mom and Dad demand a liver biopsy as Wylder is not getting better and starting to fall behind developmentally.  Results will lead to a diagnosis.
-          January 2010 – Wylder is officially diagnosed with Niemann-Pick Disease Type A
-          February 2010 – Wylder spends 4 days in New York at the International Center for Niemann-Pick Types A&B at Mount Sinai School of Medicine.  From New York Wylder spends 2 weeks at Duke Medical Center in North Carolina to see about a cord blood stem cell transplant.  Work-up includes several blood draws, MRI and CT Scans of the brain, sinus, chest, pelvis and abdomen, kidney function tests, visual, auditory, and brainstem evoked response tests, EEG, EKG, and more…Determined here that the disease has already began to effect Wylder’s brain
-          March 2010 – Wylder begins daily therapy at home consisting of physical, occupational, and feeding therapy.  Mom, Dad, and Wylder’s mutations are confirmed again by Mount Sinai.  Decision is also made that a transplant is not for Wylder.
-          April 2010 – Believe bracelets are made in honor of Wylder to keep spirits and hope alive
-          May 2010 – Wylder has 1st birthday bash with 80+ family and friends attending and more than 40 traveling from out of town to Celebrate.
-          June 2010 – An unforgettable prayer is said on the Hawaiian beach of Kaanapali by a close family friend who married mom and dad.  Wylder and the family’s spirit are lifted.
-          July 2010 – Wylder has 2nd swallow function test performed to minimize chances of aspirating into his lungs
-          August 2010 –  
-          September 2010 – Wylder has a permanent feeding tube put in his stomach and Gallbladder removed due to gall stones.  2 nights spent in the PICU.
-          October 2010 – Wylder begins breathing treatments 2 times a day
-          November 2010 –
-          December 2010 – Wylder has a CT scan and MRI of his brain and is diagnosed with Communicating Hydrocephalus. An unplanned brain surgery is performed to put in a ventriculoperitoneal shunt and drain excess CSF from his head into his abdomen.  3 nights spent in the PICU.
-          January 2011 – Shunt becomes exposed and needs to be replaced.  Complications lead to 4 more MRI’s, ultrasounds, x-rays, EKG, EEG, ECG along with several blood draws.  11 nights spent in the PICU.
-          February 2011 – Wylder has another surgery to repair a large hernia.  Wylder Nation is born to support Wylder and other families in similar situations along with the National Niemann-Pick Disease Foundation.
-          March 2011 – Wylder Nation’s 1st charity event takes place.