Hallie is a beautiful, vivacious 14 year old girl. She loves to draw and do hair and makeup. Her favorite hobby is dance and she loves being in Dance Company at school. She enjoys being outside and going on adventures. She also loves photography and being creative with her edits.
Unfortunately, unlike teens her age, Hallie spends a significant amount of time in the hospital and at doctors offices. She was born with a rare condition called Heterotaxy, where none of her organs are formed correctly or in the location they’re supposed to be. This was caused by another rare condition called Primary Ciliary Dyskinesia, which is in the same family as the condition Cystic Fibrosis. She has numerous complex birth defects that leave her fighting for her life. Her biggest issue is that she is missing half her large and small intestines, although she does have problems with the majority of her important organs including her heart lungs pancreas stomach liver kidneys and the small issue of having 5 spleens. She has defects with her spine, both with her nerves and her cervical vertebrae. She had a hard time with blood flow to most of her major organs, as well as having JIA or Juvenile Idiopathic Arthritis. Hallie struggles with P.O.T.S. or Postural Orthostatic Tachycardia Syndrome and had to do home IV fluids through a semi permanent IV for close to eleven years. She has had ongoing severe migraines off and on throughout her life. Hallie has struggles with ulcers and her intestines.
“I remember sitting in the hospital when Hallie was a baby and asking another mom what her kid was having surgery for and how many surgerie they had. When the mom laughed and said still chuckling, that they had lost track. I don’t think I completely understood why she laughed until Hallie’s 18th surgery. The nurse told me that it was astounding how many times Hallie had been hospitalized.” -Hallie’s mom
It takes a large team of GI, nephrology, hematology, urology, orthopedics, neurology, neurosurgery, cardiology, pulmonology, rheumatology, immunology, surgery, psychiatry, comprehensive care, and palliative to keep Hallie’s body working. Keeping track of all of Hallie’s doctors and appointments is more than what would be considered a full time job, not to mention her two brothers have special needs as well. While she attempts to live a normal teenage life she misses about 20-40 days of school a year.(used to be 40-65)
We are so humbled by the many people who have stepped up to help us out. Every little bit helps and we couldn’t do it without your support.
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