Reid's Story

Images captured by Little Black Dress Photography

“You’re not crazy.  There is something wrong here.”  With the utterance of those words came relief and loss.  Relief from finally getting the diagnosis that she was certain needed to be made.  Loss of the dreams she had, the vision of the life that would never be for her child.0  Emotions surged through her: anger at her doctors, at herself.  Tears that had been surfacing for the last sixteen months poured out.

In January of 2011, Reid was diagnosed with Kabuki syndrome, a rare syndrome that has a list of possible symptoms that vary in severity.  Reid has specific facial and physical characteristics, “developmental and speech delays,” and “postnatal growth retardation during the first year of his life.”

It has been a difficult process altering the vision of the life you had imagined for your child.  Reid has given his parents a new wonderful way of viewing life.  He has shown them joy in simplicity, and how life is in the little moments and the small successes.  “He has taught us about the 

fragility of life, and what is truly important.” To know Reid, is to love him.  

“He has a special quality of innocence about him.” 

To other families out there affected by Kabuki syndrome, this family wants to let you know that while “you will continue throughout life to grieve for your child, the situation that he/she has to go through, and the things that you feel he/she will miss out on, try to stay positive and focus on your child as a person.  Focus on that gorgeous smile, that sweet little giggle, and those moments that make your eyes melt.” Above all, “praise their accomplishments, and be their biggest fan!”

Fears arise about how people will treat Reid, and how people will react to his limitations. But when these moments of worry surface, Reid’s mom will look at Reid and think, “Who couldn’t love you to bits once they have met you, felt your presence, and heard your laughter?”  This brings her peace.