Troy's Story

Images Captured by Crystal B Photography

This young man’s name is Troy.  He loves wagon rides, music, and playing Peek a Boo.  He is incredibly sensitive to the feelings of others, and knows that he is there to help with a hug or a smile when someone around him is sad.

Troy was born with Cri-du-chat Syndrome, also known as 5p-.  This means that a piece of chromosome five is missing.  The diagnosis came when Troy was 10 days old.  Knowing little about it, his parents were terrified of what the future would hold.

Infants with Cri-du-chat Syndrome have a cat-like, high-pitched cry.  The disorder is characterized by intellectual disability and delayed development, small head size (Microcephaly), low birth weight, and weak muscle tone in infancy.  Cri-du-chat Syndrome is not inherited, and the size of the chromosomal deletion varies among affected individuals.

At five-years-old, Troy has the mentality of a 9-18 month old.  Troy is unable to walk due to the Hypotonia.  His legs are not strong enough to hold him up, and he does not have good balance.  He says a few words – “Mama,” “Up,” and “Oh Yea.”  He is still in diapers but is showing interest in training.  Life can be frustrating for Troy’s parents.  Because the condition is so rare, they have to explain why Troy is how he is to almost everyone they come into contact with.

It has been a challenging journey, but things are looking up.  Upon diagnosis, they were told that Troy would never speak and would be like a new born for life.  “He continues to prove that guy wrong every single day!”  While there is constant worry for Troy’s future, his parents are taking things one day at a time.  Their biggest hope for Troy is that he will one day be able to do anything he puts his mind to!

Story by Angela Stephen-Dewhurst