Devin'sMile ~ DevinSmile

On February of 2006, after years of Arianna wanting a baby brother or sister, we were blessed with our little chinito and our family was finally complete.  Our last baby brought us and the rest of the family amazing joy, especially to his grandparents; he would soon be the light of everyone's eyes.

Devin’s baby months were just like my pregnancy, pretty uneventful… he was a happy little thing; meeting some of his milestones a little late though, but we didn’t see a problem really since he was meeting them eventually (I’m not sure now if maybe we were in denial).  When at 10 months old Devin would not stay sitting up (he would tumble to the side) we finally brought up our concern to the doctor.

At 12 months we had Devin evaluated by a therapist and were told he was hypotonic (low muscle tone in parts of his body – his middle section muscles were not strong enough to support his body weight).  He was to begin weekly physical therapy and was to start wearing SMO’s (braces to support his ankles). I was floored and certainly could not have imagined what was coming.

Our next appointment was with a Neurologist - Dr. Papazian sent routine blood test to determine WHY he was hypotonic; a couple of weeks later we got some blood test results back and all showed normal.  With some guarded optimism I knew that we could get past the low muscle tone but that changed when the doctor himself called and advised me that one of Devin's tests had showed he had an extra chromosome and we needed to see a Geneticist… we of course proceeded to Google 47 chromosomes and soon realized that our perfect little guy would not have a perfect future after all.  The rug pulled from under me, I continued with the motions of seeing more doctors (and cried every day for 2 months).

In early May we had an appointment with Dr. Jayakar for genetic testing to pinpoint this 47th chromosome.  We all had blood work done (additional and more detailed tests for Devin, and for me and Denis to determine if heredity was a factor)… and we waited and waited and waited some more!

On May 25, 2007 our world was officially turned upside down - 15-month old Devin was diagnosed with Isodicentric Chromosome 15 Syndrome (commonly known as dup15q Syndrome).  A syndrome so rare that our Genetic doctor had only seen one other case; so rare that no two children are affected alike so our doctor could not tell us “he will walk at 2, he will talk at 3” - the only thing she could tell us was all the potential scary things that he may have (seizures, Autism, non-verbal, may not walk, abnormal organs, developmental delays, etc etc etc). 

We left her office and soon discovered that Devin's syndrome was indeed even rarer than what our doctor had originally said, affecting less than 1000 families worldwide, and that other than family support groups there wasn't much any doctors knew.  We were on our own to deal with this new future full of scary unknowns and uncertainties.  Dr. Jayakar told us Devin would do what he would do at his own pace, whatever and whenever that would be and that in order for him to even come close to a “normal life” he would require lifelong therapies.

And this is where we are today:  Devin is 13 years old and is still non verbal although to make up for the lack of words he has become very adept at pointing and touching what he wants as well as pushing you to where he wants you to be; he finally began to walk at 3 1/2 years old and is still very wobbly with lack of coordination and because of the hypotonia, tires quite easily.  Devin was diagnosed with Autism and is severely developmentally delayed as well as affected by many sensory issues (including bothered by loud noises, large crowds, unfamiliar places, etc).  At 7 years old, he began to have seizures and is currently on medication and controlled.. but even with all this, he is making little strides every day and we couldn't be any prouder.

Every day we're inspired by Devin.  The struggles he goes thru to be able to do the smallest things yet progressing beyond his doctors' expectations.  He's surpassed so much of what we were told he may never do, that we are in awe of him everyday.  His hard work and determination in doing things we take for granted just blows our minds and something that we should all really strive for.  He is our life, our heart and our Hero!  :,)

His future is still quite uncertain, but we hope to one day get him to his full potential, whatever that may be.  In the mean time, he continues to light up our life every day with his infectious laughter, smile and mischievous gleaming eyes.