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.

 

You can follow her story by joining her Facebook Group

Hallie is an author!

The Red Fred Project finds children living in extraordinary circumstances (rare diseases and life-threatening illnesses) and asks them the question: If you could write a book for the entire world to read, what would it be about? Hallie has answered that question in her book, The Gems Around Us. In it, a little bird named Gemma learns some important lessons about bravery, courage, and the importance of friendship. You can order your own copy for just $25 plus $5 shipping!

Order "The Gems Around Us" Now!

 

Cost is $25 + $5 shipping

Hallie's Monthly 

        Update

March 2020

As many of you may know Hallie was hospitalized March 4th. She went to the ER for a bowel obstruction which quickly escalated to having an NG tube down her nose to suck out bile from her stomach. After four short days in the hospital finally went home on the following Saturday. Before being discharged we were informed by doctors that she had to eat alot more fatty foods to gain back the weight she had lost over the span of 7 months.

April 2020

April Hallie had a rough time adjusting to quarantine from the hospital which in her words "Quarantine feels exactly like being hospitalized, only being able to see a limmited amount of people non stop and stuck inside in the same house all day while I am in pain". Later in April Hallie would under go some testing to see if her stomach was still obstructed because she was having sharp pains in her abdomen. The following Friday of testing she ended up in the ER again. They decided tto give her a PICC line on that Saturday and we went home with her on home IV nutrition.

May 2020

 Hallie was on TPN(IV nutrition) for a month. Getting her PICC line out on Saturday May 23 was the happiest most exciting day for Hallie! Just a few days before Hallie got her PICC out she decided to do her nails with a substitute UV light which ultimately burned 3/8 layers of her eye and made her wake up screaming at 11:40 pm because her eyes were so swollen. 

June 2020

June was particularly difficult for Hallie as she went through horrible POTS flare ups caused by the IV fluids in her TPN. However Hallie was able to fight through her pain to spend time with family at a family reunion in Bear Lake.

July 2020

July was very uneventfull for Hallie other than she worked hard to turn the bonus room in her house her new bedroom.(Videos on her Youtube channel). This was a very good distraction for her because she was very depressed from quarantine and desperately needed a routine to help

August 2020

Hallie was so excited for school to start in August and to beable to have a routine again. Although she was excited to go back to school her stomach pain was very intense. She was going into a very invasive procedure the following month to hopefully fixes her pain, which she didn't want to go through with. 

September 2020

September was really rough for Hallie. She was diagnosed with at least 8 or 9 kidney stones between both kidneys. Although she was not in ver much pain due to her very high pain tolerance it the stones and stomach issues drained her mentally and physically. She then went under some invasive testing at the end of the month which was a horrible experience (more on the stay in vid on youtube channel 9/26).

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