Melia's Story

Memories Captured by Gabi Moeller Photography

 Tiny Light Melia loves music, playing, and exploring, and recently started taking her first steps.  She seems like any other active little girl, and yet she is not.  The crucial question for her parents is, “Why?”

Not long after Melia was born, her mom Stephanie and dad Neil noticed that when they picked her up under her arms she would arch her back and extend her legs.  A few months later, Melia started having spasms in her back.  As Stephanie says, “The spasms were so frequent it was hard to tell where one started and finished.”  The episodes resembled seizures, except that little Melia remained coherent during them.  She was admitted to her local pediatric hospital but test after test came back normal, even as she continued to have spasms.  The lack of a diagnosis was frustrating for Melia’s parents.  “When your child is in pain and distressed and is too young to understand what is happening your heart breaks, or at least mine does,” says Stephanie.  

Many months later, Melia still has back spasms, but no diagnosis.  She visits the pediatric hospital frequently and with the help of her caregivers and family, she is developing her gross and fine motor skills.  Stephanie and Neil say that it’s difficult to cope with the question marks around Melia’s health, but they remain hopeful that their Tiny Light will be able to live a happy and pain-free life.

​written by Jayne Akizuki