Tell us about yourself
I am a junior at Towson University majoring in Family Studies. I enjoy swimming and reading in my limited free time. I was born with a rare genetic disorder which has affected my joints, heart, brain, and blood vessels. I spent most of my teen years in and out of the hospital. One of my biggest hobbies throughout my time in the hospital was, and still is writing. Writing has been therapeutic for me throughout my struggles the last several years. I gave my life to Christ shortly after I turned 15. Without him I do not know where I would be today.
What are some of the huge medical miracles you have lived through?
Just shy of my 15th birthday I almost died from a dangerous heart condition I was born with. Since I was eight years old I had the condition monitored by a cardiologist. However, that year my heart got worse fairly quickly. By the grace of God, I lived eight months longer than I should have with it in a life threatening state. A week before I turned 15 I had open heart surgery to repair the condition. Unfortunately, I had several complications and ended up needing two more heart related surgeries over the next few years. Even with a few complications it is truly a miracle I survived with it as long as I did.
Not even a year later, I was almost paralyzed by a brain disorder I have. The intensity of my symptoms and the life altering impact they had could have killed me. Thankfully, I already knew I had that condition as well and was able to get it fixed. I have very few lasting effects from the surgery.
One day, God willing, there will be a cure for both of these conditions. Until then I am just grateful to have been given the second chances that I was. My doctors are baffled by how long I have survived my disorder.
How do you persevere through the tough times?
Through all the pain, surgeries and procedures my faith and God’s help have gotten ne through the rough times. One of my favorite bible verses is Philippians 4:13 “I can do all things through Christ who strengthens me”. This verse gets me through the tough times. I could not do any of this without God, my family and my amazing friends. I am incredibly blessed to have such an amazing support system. I have seen many signs that there’s a reason things happen the way they have. This has been a big factor in keeping me going when times get particularly tough.
What advice would you give to those who face constant medical issues?
One of the biggest pieces of advice I would give to those facing ongoing medical issues is to take one day at a time and remember that the pain is not permanent and to keep fighting. I keep fighting because I know that one day there will be a cure for my conditions and the longer I fight the closer to a cure I am.
I would also advise those facing these issues to go after all their dreams in life, although it may be more difficult in some ways it is well worth it in the end. I spent most of high school in and out of the hospital and I was determined to graduate on time so I was homeschooled in order to be able to get my school work done easier. This was my way of working around my struggles to be able to go after my dream of getting into college. Now I am living at Towson University and enjoying every minute of being on my own.
One thing I have found super helpful with my struggles facing my medical issues was finding the good in it all. Even finding one little good thing in everyday helps me a lot in being able to remember that there is a reason why and that it won’t always be hard.
What are your future plans or goals in life?
I am majoring in family studies with intentions in becoming a child life specialist, which is someone who helps hospitalized children and their families cope with the different stressful aspects of being in the hospital. I have always wanted to help children like me who have to spend a lot of time stuck in a hospital. I also want to start a charity for these children and their families.
What makes you original?
The condition I have is a very unique condition. No doctor has been able to identify anyone else in the world who has the same condition that I do. This unique condition is a big aspect of what makes me original. I have also found some very original ways of coping with the condition. Although my condition may be rare and my body was not made like most peoples I believe I was made exactly the way God intended. Although it may be difficult some days I am thankful for this unique quality of mine because it has taught me so much about life that I have been so blessed to learn.