Join us in raising awareness and funds for Dup15q Syndrome and kids like Devin!

Today, there are almost 1,300 families from around the world affiliated with Dup15q Alliance. Families and individuals with dup15q come from a wide range of backgrounds and are dealing with a variety of day-to-day issues.

Join us for dinner at Chipotle on 405 West 49th Street in Hialeah

October 3rd between 5:00pm and 9:00pm

Be sure to mention this fundraiser when ordering.

Your visit will help us raise awareness and funds for families affected by Dup15q Syndrome and kids like Devin.

If you can't make it out for a burrito, please consider donating.

This is our Story.

Meet Devin... He came into our life to light up everyone's world --especially that of his then 11 year old sister. We started to notice delayed milestones at about 6 months, then at 10 months old Devin would not stay sitting up (he would tumble to the side) so we finally began our search as to what was limiting our little baby. After several visits to neurology and having lots of blood work, we were referred to genetics. On May 25, 2007 our world was officially turned upside down, 15-month old Devin was diagnosed with Isodicentric 15 Syndrome. Commonly referred to as dup15q syndrome, it is a chromosomal abnormality in which a child is born with extra genetic material from chromosome 15. Devin has 47 chromosomes, instead of the normal 46. The extra chromosome is made up of a piece of chromosome 15 that has been duplicated end-to-end like a mirror image.

We left our geneticists office in a fog and soon discovered Devin's syndrome was very rare, affecting less than 1000 families worldwide - 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). Our lifeline to our rare boy became the Dup15q Alliance!

We then began our lifelong visits to multiple therapists and doctors. He started to walk at 3 1/2 years old with the help of PT, was diagnosed with autism and sensory issues by age 5 and, unfortunately, at 7 years old began having seizures (which are currently controlled through medication). Devin is now 12 years old and is still non verbal although he communicates with us his own way. Even with all this, he is making little strides all the time and we couldn't be any prouder.

Every day we're inspired by Devin. He struggles to be able to do the smallest things, yet he's progressing beyond his doctors' expectations. He's accomplished 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 is something that we should all strive for. He is our life, our heart and our hero.