My Life’s Beginning Chapters: Julia C.

WRITTEN BY JULIA C.

If you sat in a class with me, there are a few things you might notice right away. I talk a lot, and sometimes way too much. I love learning, asking questions, asking more questions, and getting problems wrong and then right. Most people call me a know it all but I really really hate that about myself that I sometimes come off as if I think I know everything when the reality it is just the opposite. I am an outgoing college female and I am very active. I play tennis, swim, volunteer for various organizations, coach, nanny the occasional ankle biters, cook amazingly delicious meals, have random nights at Walmart with friends, play president of a club, work as an EMT, work as a caregiver, and I am a full time student. There is something that you won’t know about me right away unless I have a lot of confidence that day that we meet. If you look a little closer you might notice the tracheostomy under my scarf, or it’ll be staring you right in the eye when I decide I can leave the scarf off.

My health saga began with a broken tibia in the third grade from a skiing incident; very little at the time seemed abnormal about this incident. The buckle fracture of the tibia didn’t appear on the x-ray for 6 weeks, but it was a buckle fracture so that could be expected. I had another two broken bones before turning age 11. A recess soccer game with the boys led to a broken shoulder and seven months later leaning back in a chair with wheels on it led to a broken wrist. I was active and very good at breaking many things beyond her bones, so having a few breaks wasn’t a problem. At age 11 I developed other health problems, that later were diagnosed as idiopathic angioedema (random swelling/allergic reactions with no known cause), and asthma. Throughout middle school I struggled with these issues, but they really became severe her first year of high school. Half-way through her first semester of high school I could no longer go into the biology classroom without having a severe allergic reaction that often led to difficulty breathing and hospital visits.

By December of 2008 in her freshmen year of high school I took her first trip to the Mayo Clinic in Rochester Minnesota. After the trip Julia had been placed on new medications but things continued to worsen. I spent 10 days in the children’s ICU for the idiopathic angioedema and another 10 days at National Jewish Hospital. After lots of steroids, new medications, and hospital time Julia started to recover. I finished her school year over the summer remaining in the competitive International Baccalaureate program at Poudre High School. I entered her sophomore year of high school determined, though she still had minor struggles. Second semester of my sophomore year I finished as a home-bound student, completing the same work as my classmates but with a tutor assisting me for 3 hours of the week. During this time I held her first fundraiser as my personal project for the local Northern Colorado AIDS Project, a silent auction dinner along with a tennis tournament. Every year I have continued to do major fundraisers or philanthropic events including shaving my head for children’s cancer research for the past four years. Spring of 2010, sophomore year, I competed on the varsity tennis team at her high school where my doubles partner and I took 3rd at the Colorado Girls Tennis State tournament.

After lots of tennis I had increased foot pain that led me to see a doctor. A posterior tibial tendon tear was treated with a summer in a leg cast. I got out of the cast at the end of the summer and continued to be very active once again. In the midst of chaos before school started my older sister, Rachel, was in a sever car accident and suffered a traumatic brain injury. Rachel was in a coma for the start of my junior year of high school. Right before the school year started I had an incident with her foot leading doctors to believe that she had fully torn the tendon and would require surgery. Further investigation and an MRI of the foot showed that there was more than tendon issue. I had a stress fracture, after only walking on her foot for two weeks out of a cast. The MRI also showed what looked like soft bones throughout the entirety of her foot. Another cast was on my foot for four more months, and another visit to the Mayo Clinic. Dr. Salman Kirmani, a former geneticist at the mayo clinic, did not think the frequent use of steroids could explain Julia’s history of many broken bones at that point (7 up to that point), and the strange results of the MRI. Dr. Kirmani suggested based upon Julia’s low alkaline phosphatase that they send for genetic testing for osteogenesis imperfecta and hypophosphatasia.

My sister is truly amazing ? There isn’t a day that doesn’t go by that I don’t thank God for letting me have a second chance with her and not only show me how much I truly love her but how much I should be greatful for every second I spend with her and every second that I get to spend knowing she is doing something so amazing in the world.

As my foot continued to recover at home, the tests were sent out and would be back within 8 weeks. Rachel continued to recover from her accident at home as well, and started taking college courses again that spring. By the second week of tennis season I was playing again and had several months of no episodes of angioedema. Dr. Kirmani called with the test results that showed I had the infantile form of hypophosphatasia, though it was only one mutation that caused the malformation. Though it was scary the reality was nothing new would really come from this diagnosis. A mentor of mine made a point that I had been living with this her entire life and now it was just diagnosed, she had already made life adjustments based upon having lots of broken bones, though these weren’t limited life changes. My doubles partner and I once again placed at the state tournament and also became conference champions for the second year.

Going into her senior year of high school Julia began looking at colleges, mostly ones that were greater than 500 miles away. I dreamed of playing tennis for a college as well as studying pre-health sciences and studio art. Coe College became Julia’s home for her freshmen year of college where she played tennis, and swam for the school prior to more health complications. Spring of 2013, her freshmen spring semester, I began to struggle again with stress fractures and episodes of angioedema. A total of a month long stay in the hospital in Iowa led me to take medical leave from Coe College.

Back at home I continued with my courses at the local community college, and made the decision to continue medical leave in order to gain better control over the angioedema. I had always had a strong interest in becoming an emergency medical technician en route to her career in the medical field. Throughout the first year at home I obtained her EMT certificate from the Front Range Community College program, though this did not come without its own set of hurdles. Phenomenal instructors in the program advocated and mentored me such that I completed my certificate despite circumstances that often placed limitations on my ability to complete clinicals and be present for some classes. In the spring of 2014, though a semester late, I became a nationally certified emergency medical technician and certified in the state of Colorado. Lifelong relationships both mentors and friends came from the EMS classes I was blessed to be apart of. Finally being a patient paid off and gave me a unique perspective as a clinician.

My passion is being a provider in the medical field, especially EMS; however, I am even more passionate about giving back to others in every way of my life. I still get the opportunity to go and learn from EMT students as I play a patient for them in their skills labs, and become more inspired. My dreams are to continue into the medical field and be a phenomenally rare provider that I have seen. I also hope to help fill the void in patient care for rare patients in pediatrics through their young adult year’s maybe even just rare patients in general. I hope that one day I am able to be an instructor that inspires others the way so many of the instructors, teachers, professors, mentors, and individuals have in my life. As we learn in biology there are emergent properties of life. You can have all of the bicycle parts on your garage floor but it is not a bicycle and does not function as a bicycle until all the parts come together. I truly feel that my life would not be the same without having had the struggles I have had, and most importantly the people that have helped made me who I am. Today while I am in school studying to be a doctor someday my amazing sister is teaching English in France after graduated from Colorado State University earlier this fall. Every day of my life I have looked up to my sister, even though there have been some days its out of envy.