Aidan’s Story

Faces of the Foundation:
2016

Condition:
DUP15q Syndrome

Resources:
DUP15q Alliance

Genetics Home Reference

 

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Meet Aidan.

We are so honored that Aidan was chosen to be February’s Face of the Foundation!

When our beautiful son was born in May 2006 we knew life would change, but had no idea the direction, depth or scope of those changes.

Aidan was born with a full head of hair and big brown eyes and we instantly fell in love. When he was 4 hours old, the nurse came into the hospital room, took one look at him in the bassinet, yelled “Purple Baby!,” snatched him up and went running out of the room. It was his first of many choking episodes due to severe GERD and the first of many diagnoses.

The first few months of his life we were constantly comparing him to other babies because he was different than every baby we had ever known. We would bring this up to the doctor during well baby checkups, who promptly brushed us off as novice parents. At the 9 month mark, when Aidan was not able to sit up on his own, would not make eye contact, was not babbling, and had seemingly no interest in the world or people around him, the doctor finally saw what we were seeing and sent him to Children’s Hospital for an evaluation.

The wonderful developmental pediatrician at Children’s ran a genetic test and found he had a rare genetic disorder called Isodicentric 15q 11.2 – 13.2 tetrasomy or Dup15q Syndrome for short. Aiden has four copies of the “critical region” of the q-arm of the 15th chromosome. After seeing numerous different specialists over the next few years, Aiden received multiple secondary diagnoses including: hypotonia, sensory processing disorder, cognitive impairment, global developmental delays, moderate/severe autism, bilateral strabismus, GERD, femoral anteversion, second degree heart block Type I and Kohler disease.

Great Things to know about Aidan
  • Aidan is now 9 years old and is learning to communicate through an app on his iPad.
  • His personality is shining through – he is making jokes and is even starting to talk back to us! Ha!
  • He runs (when we didn’t think he would walk).
  • He laughs (when we couldn’t get him to smile).
  • He has a love and fascination with nature.
  • He is an amazing spirit and he has taught us so much along the way.
  • He has given us new lenses that changed how we view the world around us. Because he is here, we have met the most rock solid, salt of the earth people that have restored our faith in humanity. We have realized that the world needs more love and human connection and these ethereal beings among us are here to bring us back to what really matters.
Aidan currently non-verbal, things we think Aidan would like to say to you are:
  • Know that I am unique and be cool with my unique behavior!
  • Live in the Now with me, because that is where I am.
  • Love me for who I am – because I am greatness defined!
Things we want you to know about Dup15q:
  • Dup15q is the most frequently identified genetic anomaly in people with autism.
  • Dup15q approximately 3-5% of the autism population.
  • There are approximately 1000 people worldwide with Dup15, but growing everyday with the increase of genetic testing for people with autism
  • For more information on Dup15q, please visit: dup15q.org. We are regional reps for the Dup15q Alliance and would be happy to answer any questions you might have, or just need an ear to listen!
To people who are just starting on a path with differing disabilities:

We would say that whatever you are going through, know that understanding the cause is probably in the future. We know that your world is being shaken right now, but trust that you will find solid rock to stand on and know that you will become a better person because of the journey. Love and patience will see you through.

Aidan’s Photos

Aidan’s Blog

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