World Rare Disease Day

Today's post is in honor of my son, Will.  He is 9 years old and was born with a rare genetic disorder, Kleefstra Syndrome.  As a result of this, he also suffers from Lennox-Gastaut Syndrome, another rare disease.

Having a child with these health problems is devastating for a family.  It changes your life.  There are thousands of families that are living with this right now!  I wrote about how it affected mine here.


I have written about my son's rare disease alot in the past month in an effort to spread the word about the thousands of families living with rare disease.  I hope that, one day, a cure or successful treatment will be found to help a child living with these diseases.  If it doesn't occur in my son's lifetime, I hope that his "story" will help pave the way for future progress in a cure or treatment.

The Global Genes Project is an organization that has been instrumental in raising rare disease awareness.  Please take time to visit their facebook page here and "like" it.  By doing so, you can help spread the word about rare disease day and what it means.


When you visit their fb page, you will see pictures, like my son's above, of some children that are affected by rare disease.  This is a project, sponsored by Global Genes Project, to put a face to rare disease.  These kid's stories will break your heart.  World Rare Disease  Day is for them.