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Cheyenne’s story written by mom…
Cheyenne was born January 6, 2001. From the second she took her first breath she was in distress. With a collapsed right lung, extreme low tone, no suck, swallow or gag reflex, she was immediately intubated and placed on a vent and a feeding tube was put in place. After many unsuccessful attempts removing the ventilator, the doctors realized she would be needing it long term. So, she had surgery to have the trach put in. Muscle biopsies and lots of blood tests all came back normal. At 3 months she was moved to the Children’s Specialized Hospital and remained there for another 3 months. At 6 months old Cheyenne finally came home for the first time. But it has not been an easy road. Many doctors, many nurses, many therapists, Cheyenne is finally weaned from the vent during the day but continues
to need it at night. It was not til 2 years ago (2014) that Cheyenne was finally given a name for her condition. The RYRI Ryanodine. A rare genetic myopathy that affects all the skeletal muscles. It is still very new to doctors and scientist, so there are currently no treatments or cures. It is a lifelong physical illness.
Cheyenne had scoliosis surgery in 2014 to correct a 80% curvature of her spine and has recovered wonderfully. We were told she may never walk, talk breath on her own or eat. Well, not only is she walking and talking she is fully mainstreamed and started her first year of high school this year.