From Harper's Dad
If you've ever had the experience of witnessing the birth of your child, it is a moment that is filled with joy and hope.  You'll do anything for that little life that rests in your arms and you hope for their lives to be everything you had always dreamed.
Our story starts with our daughter Harper, who was three at the time of this writing. From an early age, something just felt off with Harper. It's difficult to describe. She has always been on the lower end of the growth curve, as well as being a late walker and talker. We have been blessed with extraordinary physical and speech therapists to help her through her developmental delays. One of our initial thoughts was autism, however Harper had been ruled off the spectrum for autism. But once again, we could just tell that something was missing.
 
Harper has been through more tests and seen more doctors than most college students. She has been to a neurologist, otolarynologist, endocrinologist, ophthalmologist, orthopedist, just to name a few. She has had CT scans, x-rays, MRI's, you name it. Everything came back clean. She's fine.
 
Enter genetics.

Harper underwent a DNA microarray test to identify issues in her genetic coding. This was seemingly the last test that we could run. The day of the results would be the worst day of our lives. Harper was diagnosed with a deletion along the 12th chromosome, encompassing the SOX5 gene. Do you know what this meant? Nothing. Not a clue. Much like you're thinking right now. But there we sat with this uncertainty, while a doctor took our child's life away. 'She will never be in a normal 4th grade classroom,' she said. 'She may need to live with you her whole life. Severe intellectual diasbility. There is nothing you can do to replace the gene or fix the issue.' Elementary school. Middle school. Dating. Driving. Prom. Graduation. College. Marriage. The list goes on. All being stripped away from us in that excruciating 10 minutes in the doctors' office.

So we got home. We cried. We cried a lot. Let me be clear, if this is to be my daughters' life, then so be it. I love her to pieces. She can live in our house her whole life and I'll take care of her until the day I die.
As I lay on the floor of my living room in tears that day, my daughter comes over to me and asks, not in words mind you but in clear parent-child communication, to go outside. 'Harper, we just can't do it right now.' I choked. Then she takes off into the kitchen and I hear a chair being pushed across the floor. Through tears, I watched this little girl push a chair to the locked backdoor, climb up, unlock the deadbolt and open the door. Problem solving skills. Reasoning. Intellectual disability? Sure doesn't look like it. All I saw was hope.

I picked myself up, dusted myself off and got to work. I started replaying the conversation with the doctor in my head. I started researching on my own. I decided that we are not going to settle for the life outcome that doctor had thrust upon this 3-year old little girl.
Over the coming months we would seek a second opinion. That's when the doors began to open. Hope through genetic research. Hope to minimize the effects of her genetic deletion by enhancing the copy of the genes that she has left or improving the quality of the surrounding genes.

As parents of a child facing a genetic disorder, and new advocates for those fighting genetic disorders around the world, this glimmer of hope is what sets the stage and mission for Harper's Quest.
Though our story starts with Harper, she is only the beginning. Our organization is founded to assist families with the funding of research related to genetically caused developmental and intellectual disabilities. Research that will also one day be applicable and transferable to a larger overall understanding of genetics, treatments and cures for these disorders.

Though the world of genetics is far more complicated and vast than we currently comprehend, our quest for knowledge, for hope, for answers and for progress is one that promises the opportunity to positively impact the lives of millions.

It's a bold quest. It's a challenging quest, but it's a quest of promise.
 
It's Harper's Quest.