Ella’s Story

Elizabeth Janae, better known as Ella, was born in April 2010.  When she was born, there was no indication that she had Rett Sydrome.  Like most girls with this diagnosis, she developed typically, hitting the vast majority of her milestones right on time.   The only indication that anything was amiss was that Ella couldn’t crawl or walk at 15 months of age.  At that time, she began losing acquired skills—primarily the ability to purposefully use her hands and her words.  At 22 months, she was diagnosed.  Rett Syndrome affects a child’s ability to motor plan.  Other complications can arise, as well, such as epilepsy and scoliosis.  Today, Ella is on four anti-convulsive medications, which only somewhat manage her seizures.  She receives instruction along with speech and occupational therapies through the Palm Beach County School District’s Hospital-Homebound Program.  She receives physical therapy privately.  She visits the chiropractor every two weeks and her orthopedic team in Tampa every six months or so.  Each year she travels to Birmingham, AL to participate in a Rett Clinic with a neurologist who specializes in her diagnosis.

Ella has many interests.  She loves spending one-on-one time with friends, family, therapists, and teachers.  She enjoys listening to music, reading books, going on walks, eating yummy foods, and watching Mickey Mouse. 

Though Ella can’t show us in conventional ways, she understands us.  One thing Rett Syndrome cannot steal from her is her sweet disposition.  To know her is to fall in love with her.  She is a smart, beautiful, radiant child with a great sense of humor. 

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