Harper's Story
Hi, my name is Harper. I am 4 years old.  When I was three, I found out that I am missing part of my SOX5 gene that is located along the 12th chromosome.  Wow that’s a mouthful! 

My parents were the first to identify that something was wrong in my development.  My delay in walking and talking were the two main things that they noticed.  Out of concern for me, they had me tested genetically to see if they could find out what was causing this.  That’s when they discovered that I was missing part of a gene on the 12th chromosome.  To their surprise, they found out that there was no research being done to find out what can be done for children who are missing this gene.

My doctors tell me that this is an extremely rare disorder as there are currently only 15 to 20 other kids across the world who have been diagnosed with this same kind of deletion.  It is so rare that there is currently no name or syndrome associated with it.  So there is little known about what may have caused this, what impact it will have on me as I grow older, and what treatments may be available.

This leads me to tell you about Harper’s Quest. 

Harper’s Quest is all about hope through genetic research.  This non-profit organization has been started for the purpose of raising funds to support this kind of research. Due to the rarity of my genetic disorder, this is the only way that this kind of research is going to happen. My research will begin at the Cleveland Clinic, in the Lerner Research Institute.  My quest is to find answers to help other children and their families with this research. It is reported that 1/200 individuals have some sort of genetic mishap, whether that be a deletion, duplication or translocation. Many of which are undiagnosed.

I invite you to join me in my special quest.  You can find additional information throughout my website or by reaching out to my non-profit using the Contact Us information above. 
You can also follow-us on Facebook by liking our page at www.facebook.com/HarpersQuest

Please come join my team!