Riley

Riley was born on February 5, 2004 and has Cornelia de Lange Syndrome.  CdLS is a genetic disorder that causes a range of physical, cognitive and medical challenges that affect both genders equally.  The syndrome if seen in all races and ethnic backgrounds.   Riley was not diagnosed until he was 17 months old after many doctor visits with a Developmental Pediatrican and a Geneticist.  Once diagnosed I put my “ok I need to get moving and figure out what we need to do” hat on and had him seen by many specialists.  There wasn’t any ‘grieving’ time for me. I put my heart into it and proceeded forward to  get him whatever help he needed.  We had many doctor visits to rule things out as well as therapy evaluations.  Riley is doing great in school and is progressing well.  He is 14 years old and in 8th grade.  Syndrome or not he is certainly a smart little boy.

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For more information on CdLS visit www.cdlsusa.org

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