Team Davien is walking to raise awareness and funds for Dup15q

Click Here To Register for the 2018 Denver Believe Walk

Belmar Park - Denver, CO. September 16th from 8:30 - 12:00.

Family and Friends,

We, along with other Dup15q families, are launching a Believe Walk in Denver on September 16th to raise awareness and funds for Dup15q Syndrome, a rare chromosome duplication syndrome that causes developmental disabilities, autism, seizure disorders, and numerous other challenges. Dup15q is exceptionally rare with only approximately 1,600 known patients in the world.

As most of you all know Davien was diagnosed with Dup15q when he was 7 years old. When Davien was born on June 26, 2009 he was pretty much a healthy baby boy. Davien was in ICU for about 3 days with oxygen, but other then that he was doing amazing! After he was clear to be released from the hospital we took him home and enjoyed every moment with him. After months passed by Davien seemed to be doing well, for the most part. There were some little things I did notice along the way, he didn't seem to be meeting his milestones like other kids his age. I brought it up to his pediatrician numerous times, to be told every child meets their milestones at different stages. Being a first time mother I let it go. After he turned one I could not take it anymore, I knew in my heart that something was not right. At that time I switched his pediatrician and finally got a referral for Speech therapy. After going to Speech therapy we also got referred to go to OT and PT as well. All of Davien's therapist were amazing!!! Till this day we still have relationships with his therapists that worked with him since he was 2 years old. His therapists were the ones to direct us to find out what was causing Davien's delays. After years of going to see numerous specialists we got a referral to see a Geneticist. That is when we finally got answers! After years of wondering why my sweet boy was delayed, weaker on one side, and other multiple things, we finally found out he has Dup15q IDIC(15). It was definitely hard to hear that, of course we ran threw different emotions, but at the end of the day that did not change who Davien is! That day just finally made sense to us! That explained why Davien has hypotonia, intellectual disability, on the autism spectrum, etc. It took us years to find the answer, but we did!!! It was all due to amazing people we crossed paths with on this journey! With out them I do not know where we would be at today.

Davien is an amazing, loving, caring boy!!! He has a great heart that will definitely take him places in life. He has definitely taught us a lot and continues to teach us so much. We can not predict the future for our kids and we definitely can not say what the future holds for our Dupers, all we know is that they are AMAZING kids that are loved by so many!

Gather your family and friends. Dress in blue (our signature color). Know that you're part of something bigger. By raising awareness we can help other families who may still be searching for answers. Any funds raised will go to Dup15q Alliance who provides family support and promotes awareness, research and targeted treatments for dup15q syndrome.

If you can't make the walk, please consider a donation to the Dup15q Alliance.

Love,

Matt, Jennifer, Davien, and Analesia