We call Emery our ray of sunshine. She radiates joy, is extremely determined, and spunky. She loves music, spinning, animals, and is always up for an adventure. She was born with Rubinstein-Taybi Syndrome, a rare genetic syndrome that effects every process and organ system in the body in different ways, Agenesis of the Corpus Callosum, which means the bridge between the right and left side of the brain is missing, chiari type one, a malformation of the skull that caused the brain to protrude down into the brain stem, severe photophobia, and a tethered spinal cord. All of these diagnoses branch off into more diagnoses that make her a very complex and rare little girl.
Our day to day life is filled with medicines, therapies, appointments, medical trips to Cincinnati to see specialists that are familiar with her syndrome, and facing the unknown head on. But our days are also filled with deep abounding joy, laughs, family adventures, and fierce love. Having a child that is medically complex is challenging in many ways. One of those ways is the toll it can take financially. The money raised by Shout Your Story will be used to fund continued trips from Georgia to Cincinnati Children’s Hospital where RTS specialists take care of Emery’s medical needs, and special therapies not covered by insurance to improve Emery’s quality of life.
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