Malisa
Graduating from high school, going to college, living away from home, having a boyfriend, getting a job, getting married, going on a honeymoon, having children, owning your own home…
At 28 yrs old, these are all things I have accomplished or want to accomplish in my life. Yet they are also things that have been challenging for me to achieve because of the daily struggles of living with Mitochondrial disease (mito).
When I first developed symptoms suggestive of Mitochondrial disease, I was fourteen years old and in the second month of ninth grade. By the age of sixteen, I had severe gastrointestinal dysmotility which progressed and required that I start on intravenous nutrition, also called total parenteral nutrition (TPN). A g-tube was placed in my stomach for draining gastric secretions that build up and a j-tube was placed in my small intestine for medications and a small amount of feedings. Many people still ask, eleven years after I first started on TPN, how I manage to live my life hooked up to an IV 21 hrs a day. My response to them is that TPN has given me the energy to live. Without it, my quality of life would be little to none.
As I got older and entered my late teens and early twenties, more symptoms developed…autonomic symptoms and difficulty regulating my blood pressure and heart rate, pancreatitis, hypoglycemia, muscle pain and weakness, severe fatigue, among others. In the middle of developing all of these symptoms, I was living in the dorms, going to classes for a degree in nursing, and had my first serious relationship with my boyfriend, Dave. TPN was still a constant companion and my dorm room resembled a medical supply closet. In my senior year of nursing school, I got really sick with the flu and was hospitalized. When I came home, I was extremely weak and had my first exacerbation of what we now know is Mitochondrial disease.
After I graduated from college and had my bachelor’s in nursing, I worked for a year as a pediatric homecare nurse. For the past three years, I have been working as a consultant at The Children’s Hospital of Philadelphia with a program that I co-developed for teens and young adults with special healthcare needs. Our goal is to give them the resources, advocacy, and support that they need as they transition into adulthood with an illness. In the spring of 2004, after 6 years of dating my boyfriend Dave, he proposed to me. We set the date for our wedding to be in September 2005.
2005 turned out to be a rough year for me. I spent a total of about seven weeks in the hospital, most of which occurred between April and August. I got out of the hospital three weeks before our wedding day on September 17th. Despite concerns about whether I would be healthy enough to walk down the aisle, the day went perfectly. I felt like I stepped out of a fairytale and got to be a princess for a day. Illness melted away and I felt healthy and beautiful.
Since marrying her sweetheart Dave, Malisa has helped hundreds of Oley members. She is a great listener and always has something positive to say to the teens, the younger kids, and the parents who care for them. She goes above and beyond to stay in touch with a large network of consumers, writes many cheerful messages, sends care packages and visits them.
She’s built a wonderful support network for herself as well, which has been especially critical in the past couple of years as her mitochondrial disorder has robbed her of her energy. True to her spirit, she is researching the disease, and adjusting to her lower energy level one day at a time.