Emily
Emily is a beautiful little girl born February 17, 2017. Her ocean blue eyes light up a room and some ridiculously long eye lashes catch the attention of everyone she comes across. Here is the story of how our little warrior Emily became paralyzed from the neck down within 24 hours, due to a one in a million disease called Transverse Myelitis.
At six months old, on the morning of Saturday August 19, 2017 Emily was a happy, active little girl who was beginning to walk with minimal assistance. At 11am Emily became irritable and fussy. Due to a recent change from breast milk to formula, her parents didn’t suspect anything was abnormal.
As the day went on Emily only became more fussy and irritable. At 3:00 she began to feel a little better after a warm bath, but did not kick and splash like usual. Her mother started moving Emily's legs around and this caused big tears to well up in her eyes. She knew something wasn't right. Her legs were like Jell-O. At 4:00pm her parents headed to the Emergency Room. Long story short, they said she had gas and sent them home.
Emily didn't improve and started getting lethargic. Her arms became almost as useless as her legs. She was like a rag doll and looked grey. They took her to a larger hospital over an hour away. Numerous tests were done. Everything kept coming back fine. Blood work was good, x-rays, ultrasound and CT scan were all clear. But something was wrong with Emily. Emily continued to get worse and by now Emily was completely paralyzed and flaccid from neck down.
Emily’s admitting team came to the ER and performed a nasal swab and a spinal tap. These were sent off for testing and Emily was taken to the Pediatric Intensive Care Unit. Monday August 21, 2017 Emily was only getting worse and her family wasn’t getting answers as to what was happening to their baby girl. At 10:30 AM Emily was sent for an MRI. She was sedated and in testing for 4 hours. Emily’s results came back...she had inflammation in her spinal cord from C2-S1. Emily was eventually diagnosed with idiopathic acute transverse myelitis and spent 10 days in the PICU.
Emily is an incomplete quadriplegic. She has regained movement in her arms, but continues to struggle with use of her right hand. Emily has a weak torso and while she can move her legs she can only stand with the use of specialized braces on her legs and torso for a short time. She currently goes to physical and occupational therapy three days per week and has home therapy daily.
Due to the rarity of this, specialty care is few and far between. Emily and her mother travel to Dallas, TX for her Neurological care, Birmingham, AL for her Physiatrist and Baltimore, MD every 3-4 months for Emily to see Urology and spend two weeks at outpatient therapy at a Spinal Cord Injury Institute. Specialized equipment is needed and ongoing as her care progresses.
Emily is a beautiful little girl born February 17, 2017. Her ocean blue eyes light up a room and some ridiculously long eye lashes catch the attention of everyone she comes across. Here is the story of how our little warrior Emily became paralyzed from the neck down within 24 hours, due to a one in a million disease called Transverse Myelitis.
At six months old, on the morning of Saturday August 19, 2017 Emily was a happy, active little girl who was beginning to walk with minimal assistance. At 11am Emily became irritable and fussy. Due to a recent change from breast milk to formula, her parents didn’t suspect anything was abnormal.
As the day went on Emily only became more fussy and irritable. At 3:00 she began to feel a little better after a warm bath, but did not kick and splash like usual. Her mother started moving Emily's legs around and this caused big tears to well up in her eyes. She knew something wasn't right. Her legs were like Jell-O. At 4:00pm her parents headed to the Emergency Room. Long story short, they said she had gas and sent them home.
Emily didn't improve and started getting lethargic. Her arms became almost as useless as her legs. She was like a rag doll and looked grey. They took her to a larger hospital over an hour away. Numerous tests were done. Everything kept coming back fine. Blood work was good, x-rays, ultrasound and CT scan were all clear. But something was wrong with Emily. Emily continued to get worse and by now Emily was completely paralyzed and flaccid from neck down.
Emily’s admitting team came to the ER and performed a nasal swab and a spinal tap. These were sent off for testing and Emily was taken to the Pediatric Intensive Care Unit. Monday August 21, 2017 Emily was only getting worse and her family wasn’t getting answers as to what was happening to their baby girl. At 10:30 AM Emily was sent for an MRI. She was sedated and in testing for 4 hours. Emily’s results came back...she had inflammation in her spinal cord from C2-S1. Emily was eventually diagnosed with idiopathic acute transverse myelitis and spent 10 days in the PICU.
Emily is an incomplete quadriplegic. She has regained movement in her arms, but continues to struggle with use of her right hand. Emily has a weak torso and while she can move her legs she can only stand with the use of specialized braces on her legs and torso for a short time. She currently goes to physical and occupational therapy three days per week and has home therapy daily.
Due to the rarity of this, specialty care is few and far between. Emily and her mother travel to Dallas, TX for her Neurological care, Birmingham, AL for her Physiatrist and Baltimore, MD every 3-4 months for Emily to see Urology and spend two weeks at outpatient therapy at a Spinal Cord Injury Institute. Specialized equipment is needed and ongoing as her care progresses.
