Cooper arrived a long and lean, beautiful baby boy in August of 2014 in Chicago. He was literally born as the Blue Angels were screaming by Prentice Women’s Hospital for the annual Chicago Air and Water Show. Incredible. We were thrilled to be starting our new life as a family of three and spent the next few months doing all of the new parent things – strolling around the neighborhood, visiting with friends and family, bouncing Coop around the living room at 2 AM, and planning out the years to come. Life was GREAT!

At the six-week mark, I started to have a feeling in my heart – call it “Mother’s Intuition” – something was different. After his first birthday, Cooper was still army crawling to get around. This “overly-worried, first-time mother” was told for the very last time that my son was fine. 

Cooper saw a neurologist, and after a few weeks and a genetic microarray, we got the call. Cooper had a rare, unnamed chromosome disorder (a microduplication of the xp.11.22-23 chromosome).  We were told this extra genetic information would result in severe language delays and moderate to severe cognitive disabilities. Instantly, our picture of life with Cooper was turned upside down.

Of the 60-70 cases of his specific disorder documented to date, there were cases of children not able to speak at all, and some of whom were speaking in sentences.  One four-year-old was still crawling to get around, while another 6-year-old participated in gym class.  In all cases, mild to severe learning disabilities seemed to be present. Many of the children were on the Autism spectrum - as is Cooper.

After a few days of questioning, processing, and just holding Cooper tight, it was time to get to work.  We knew literally NOTHING but were determined to provide the best resources possible for Cooper.  Over the past 5 years, we’ve met with genetic counselors; developmental pediatricians; neurosurgeons; neurologists; physical, occupational, speech, behavioral, and developmental therapists; attended four therapeutic preschools with varying emphases; done in-home, outpatient, on-the-back-deck therapies, and everything in between.  It’s been a wild ride, but one that has taught us so much about the world, and about ourselves.

Throughout our journey with Cooper, we have come to know the challenges that arise with raising a child with developmental and intellectual disabilities.  We have been incredibly lucky to have the unwavering support of our families and friends; and one beautiful moment at a time, we have witnessed the impact the kindness and understanding of strangers can have (at some of the most desperate moments!). 

Individuals with disabilities just need a little bit more, and the love we’ve been given on our journey has inspired us to push support and resources out to families in similar situations, amplifying what we’ve been so lucky to receive.

Thank you so incredibly much for your interest and support in the Cooper Royall Foundation.  Let’s work together to recognize and support these exceptional individuals!