His Story About Living With MPS1

In 2002 Sarah and Greg Fletcher’s youngest son Erik was diagnosed with MPS1. At that time children with MPS1 often died within a few years. Remarkably, Erik’s older brother, Ian, was a match for a bone marrow transplant and Erik received his transplant at Children’s Hospital, Orange County (CHOC) in August of that year.

Despite the success of the bone marrow transplant in reducing the storage of material in Erik’s soft tissues, the road ahead continues to be extremely difficult. Erik has endured fourteen surgical procedures including hernia surgery at age two, carpal tunnel surgery and trigger-finger releases on all ten digits and sinus surgery at age four, hip reconstructive surgery at age five and again at age ten, bi-lateral knee surgery at age six, eye surgery at age seven, and spinal fusion surgery before his eighth birthday.

Erik is currently recovering from surgery he had in May 2011 to reconstruct his left hip and lengthen several muscles in his legs. The recovery from this surgery is quite long due to the fact that he could not bear any weight on his left leg for 8 weeks following the surgery.  MPS1 had caused his left hip to become partially dislocated because of improper bone growth and movement in his joints and tendons had also become constricted.

Erik is now ten years old and attending a regular fifth grade class at Lincoln Elementary School in Corona Del Mar, California. Despite the success of his many surgeries, Erik has to spend time with multiple therapists and doctors just to maintain his overall health. Because of the degenerative nature of MPS1, Erik often struggles to move comfortably and his ability to participate in normal activities is diminished.

Through it all, Erik’s positive attitude and his joy in being able to participate has made his family and those around him realize the pleasure of being together and having pride in doing your best. Inspired by his strength and his enthusiasm, his family has formed the MPS1 Research Foundation to support the hard work of scientists and doctors working to help ease the pain and suffering of those with this terrible disease.