Aidan -Dup15q Family Story

August 16, 2022

My wife, Adrienne, and I were married in 1992 and decided to wait to have kids. Instead, we focused on education, careers and enjoying the freedom that comes with having no kids. Taking days long hiking/camping trips, going to Las Vegas on a whim or going on a drive with no destination. We had been married for 14 years when we realized that if we wanted to have kids it was time to consider it.

On May 17th 2006 our beautiful boy Aidan was born. We knew right away that something was off. He only cried for a few seconds after being born and had his first choking episode at 4 hours old. He was unable to nurse and even had trouble bottle feeding. Over the next 9 months he failed to reach pretty much every milestone. He never cried, even when he was wet or hungry. He rarely acknowledged you when you entered the room and then, for the most part seemed oblivious to the world around him. At our 9-month follow-up visit the pediatrician referred us to Children’s Hospital. The developmental pediatrician suspected Fragile X syndrome and requested genetic testing. Instead of Fragile X the tests came back as Dup15q. Unfortunately, at that time there wasn’t a lot of information available about Dup15q so we didn’t pay much attention to it (the only reason the doctor knew about it was her old college roommate happened to be doing research on it). We definitely knew he had autism (even though he wouldn’t be officially diagnosed with that until 2 years old) so we began that whole regimen of therapies; PT, OT, Speech, Feeding Therapy, Horse Riding, massage, and the Sonrise program. We turned our basement into a therapy room with all sorts of sensory toys and balls and games. We installed a hook in the ceiling to connect different types of swings and brought in all sorts of therapists to work with Aidan. After several years we realized we weren’t seeing any of the results that we expected, or were seeing in other kids with autism. Even Aidan’s “autism” seemed to be different from the other kids we had met. So, we decided to look into Dup15q and see if this was the driving factor affecting Aidan. We found a website (called IDEAS at the time) and all the descriptions of Dup15q completely fit Aidan. There happened to be a conference in Minneapolis