Andrew -Dup15q Family Story

February 9, 2018

Andrew turned 4 years old this past November and is living with Dup15q Syndrome.  As early as 6 months old, we noticed that something was not quite right.  Andrew hadn’t really started moving much or reaching for things.  He was very easy going and was very “floppy”.  We discussed our concerns with our pediatrician who recommended we look into Early Intervention Services.  Although, at the time, it was not yet known why Andrew had delayed development, Andrew qualified for services.  He began receiving physical and occupational therapies around 7 months old.  Eventually, in March 2015, at 15 1/2 months old, after a series of doctors’ visits and tests, a genetic test (microarray) revealed Andrew has an interstitial duplication of genetic material on his 15th chromosome.   The doctors didn’t know much about the syndrome but were able to direct us to the Dup15q Alliance’s website.  It was through the website, that we learned a lot more about Dup15q and connected with the Alliance.  We spoke to other Dup15q parents and quickly expanded Andrew’s EI therapies to include developmental intervention (DI).

Andrew responded very well to his Early Intervention therapies.  Private and EI speech therapies were also added shortly before he turned 2 and was not yet talking.  Eventually, Andrew was completing 13 hours of therapy each week!  The therapies were a huge help for Andrew.  During his time in Early Intervention Andrew learned to crawl, walk, and talk. He loved his therapists and we are proud of the strides he made!  We are so grateful for his amazing team and still keep in touch with some of his therapists.

AndrewAndrew aged out of Early Intervention when he turned 3 last November and moved on to the public school system.  He started the public school system in a full day ABA (applied behavior analysis) preschool) preschool program.  The same therapies he was getting through Early Intervention are now done at school.  Andrew made remarkable progress in his first year of school.  His vocabulary expanded significantly and now it’s hard to get him to stop talking!  He made friends with his classmates and really seemed to love school.  He started his second full school year and is off to a great start.

Andrew still struggles to overcome some physical challenges due to low muscle tone and is still behind in some milestones (potty training has been a challenge – he still struggles with constipation!)  Overall, Andrew is a very happy young boy with a great sense of humor.  He amazes us daily with his resiliency.  He loves to pretend cook and dance with his big sister (sometimes in her high heels).  He also loves trucks, Daniel Tiger’s Neighborhood, and Curious George.  We have been so blessed with Andrew and his big sister Emma!   They both welcomed with love their little brother Matthew this fall!

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