Holden has recently been diagnosed with Lesch-Nyhan Syndrome. This is an extremely rare genetic condition. There are only four other boys with this in Canada.
It is caused by the deletion of the HGPRT1 gene which is responsible for the production of an enzyme that controls uric acid in your blood. The absence of this enzyme causes uric acid to build up in the body and cause kidney issues, neurological problems effecting muscle control, and self injurious behaviours such as finger and lip biting.
Holden is a happy fun loving little boy whose smile can light up anyone’s day. He enjoys playing with his Hot Wheels collection and race tracks, swimming, music, hockey which he loves to watch his Montreal Canadiens play with his dad, and getting into trouble with his older sister Mallory.
He lives as normal life as possible– aside from the many doctors, therapists and appointments and none of this would be possible without the support of his family, friends, and community