{RARE}

In honor of National Rare Disease Day yesterday I wanted to share my son’s story with you. Shortly after our son was born we were told the worst news possible. “We don’t expect him to make it to his first birthday.” And if that wasn’t enough “we don’t expect him to sit up, talk, walk, do much of anything… your son will be in a vegetative state his entire life.” Our hearts were broken to find out that our son was diagnosed with a very rare life threatening disorder called Trichothiodystrophy. {109 diagnosed cases in the WORLD} There is no cure for this awful beast but there is hope! Collin is now 11 years old and lives a very happy life. We have had to watch this beast take over his body but it has not defeated his spirit. My hope in sharing his story is that those just beginning on this long journey will see that there is HOPE.