Jett's Story

Jett Robbie Skousen is our 4th out of 5 children.  He was born on January 28th, 2008, and was a seemingly perfect child.  He fit right into our family.  All of the kids loved him and Matt and I would fight over who got to feed him or hold him.  He was such a sweet baby with a mild temper.  As he got older, we started to notice a weakness about him.  It seemed that he struggled to get up off the floor and to keep up with his friends. They would just run circles around him.  When he was three years old his pediatrician referred him to a neurologist who ordered a CPK test.  A normal person’s CPK level is around 150-200.  Jetts came back at 11,000.  So a genetic test was ordered.

On March 11, 2011, at 1:00pm we got the call that Jett had Duchenne Muscular Dystrophy (DMD).   DMD is a neuromuscular disease that restricts his body from producing dystrophin.  Dystrophin is like the glue that holds your muscle fibers together.  When Jett’s muscles break down, instead of his body rebuilding them, his body comes in and replaces the muscle with scar tissue.  It is a genetic disorder that is degenerative with no cure.  Boys with Duchenne lose their ability to walk between the ages of 9-12 years old, have almost no muscle function by their late teens, and generally don’t live past their early 20’s. No one who has ever had it has ever survived it.  It has a 100% fatality rate.