Jordan’s 23rd Birthday: Smiling “like a rock star”


by Pam and Tony

Happy Birthday to the girl who first made me a mom.  To the little girl that taught her whole family and community what love is all about and how to love unconditionally.  To the little girl that has had to struggle and fight all of her life but still smiles through every day like a rock star.  To the little girl that is helping to write a story about a disease (NGLY1 deficiency) that until a few years ago, no one knew existed.

She is one of the oldest known children to have this very rare disease.  Her eyes brighten when she hears her mom and dad, especially dad, come into the room.

More than anything she loves her ball that she rattles all day long.  She loves to listen to Christian music.   And even though she can’t eat real food anymore, she still loves to eat ice cream!!!   So for her birthday, she knows she will get to go to Dairy Queen for a hot fudge sundae.

Jordan it’s hard to believe you are 23 years old.  You are and have always been our sunshine.  We love you so much.

– mom and dad

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