Chase’s Story

Chase was born on May 22, 2003.  He weighed 6 lbs 5 oz.  At birth, he was given a clean bill of health.

For the first few months of his life everything seemed normal.  Looking back, he did struggle to gain weight and eat normally, but it was never terribly alarming.  He reached all of his early milestones on time.  He smiled, rolled over, sat up, crawled, walked and even talked.

It was at about 15 months old, August 2004, that we started to notice that something was wrong.  He was having trouble walking.  We were referred to a neurologist, who diagnosed Chase with Cerebral Palsy.  He then had a sleep study, MRI, received physical therapy, and leg and thumb braces.

But it wasn’t Cerebral Palsy.  Chase continued to regress through all of his infantile milestones.  He stopped walking, then wouldn’t crawl.  He also continued to struggle with his eating and eventually it became difficult for him to swallow any thin liquids (milk, water, juice, etc.).  The neurologist agreed that this did not fit the original diagnosis, so he referred us to the metabolic specialist at CHOC.  We made an appointment, but it was 2 months away.

In the meantime, Chase regressed further, until he was not able to keep himself hydrated.  In February of 2005, Chase was admitted to CHOC hospital for hydration and further tests.  We always said we wanted all the specialists sitting in the same room trying to figure out what was going on.  Well, we got our wish while Chase was in the hospital.  We saw the metabolic doctor who ordered another MRI, blood tests, and a nerve study.  Because Chase couldn’t swallow very well, it was decided to put in a feeding tube.

Chase came home from the hospital after 10 days, and a few days later, we got the diagnosis of Krabbe Disease.  The doctors had prepared us for this diagnosis, but you’re never really ready.  Over the next few months we focused on keeping Chase comfortable and enjoying every moment we had with him.

In early July of 2005, Chase came down with pneumonia and was hospitalized.  After this time, he did not smile anymore.  He was finally healed in heaven on July 21, 2005.