Jordan’s Disability

  • Jordan was diagnosed with a genetic progressive muscle disease when she was 6 years old.
  • After many years of tests it was determined to be a type of muscular dystrophy – specifically ‘Neuromuscular Myopathy’.
  • Jordan’s muscles are slowly atrophying and deteriorating.
  • Around age 6, Jordan was having trouble running and her gait was changing – she was on a soccer team and was having trouble kicking the soccer ball.
  • Between the ages of 6-10 Jordan lost her ability to lift her arms above shoulder height and was tripping and falling many times because of the weakness in her legs.
  • Jordan became totally dependent on a wheelchair when she was 11 years old.
  • Because of Jordan’s continued muscle deterioration, she developed severe scoliosis which is very common in children with muscular dystrophy. Because of this, she underwent total spinal fusion when she was 12. She now has 2 titanium rods in her back holding her spine upright.
  • During the High School years, Jordan suffered from both eventual loss of use of her hands (ability to write) and also breathing complications.
  • Jordan taught herself to write left handed (she’s naturally right-handed), but when that no longer worked she used her computer mouse with an on-screen keyboard to complete her studies. Jordan is still able to prop one hand on top of the other to manipulate her computer mouse and she gets her college classes done by clicking one letter at a time to complete these studies. She even passed a drawing class last semester which was a laborious feat of time and endurance!
  • Regarding Jordan’s breathing complications, she now uses a ‘Bi-pap’ breathing machine full-time. This helps push air into her lungs, inflate her lungs, and then helps her exhale carbon dioxide. Jordan relies on this machine, which is a mask on her face with nasal pillows, 24 hours a day.
  • As Jordan weakened so did her ability to chew and swallow food. She has had a feeding tube since 2006, which helps provide her with the majority of her calories – she still eats a little on her own. Unfortunately, she now has trouble with aspirating both food items and saliva. Jordan requires a suction machine to be on hand at all times to help when this happens.
  • Jordan must also do breathing exercises twice a day. She uses both a cough assist machine and a vibrating vest, which help to keep her lungs healthy and clear.

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