As a child, it’s hard to communicate how you feel in many ways. It becomes even more difficult when you’re trying to balance surviving an abusive household. Add on severe health issues, and a kid may never be able to speak up for what they need. I was that child for many years.
My birth mother who raised my sister and me struggled to keep a job, to take care of us, and also battled alcoholism. My health fell to the sidelines for over a decade, and I stayed sick and was hospitalized almost yearly. I was always fighting bronchitis, malnutrition and dehydration, severe stomach issues, and chronic lung issues. Through elementary school and middle school, I was repeatedly told that my passing out, asthma attacks, and low immune system was because of severe asthma and bad allergies.
As I got hospitalized more often, I missed more school, dealt with more abuse at home, and faced more challenges than ever. I had frequent meetings with my social worker and court-appointed special advocate worker, where they would check in with us while we faced court appointments, had family counseling, and received government aid. The main request I always made during these check-ins was for help with my health. It got to a point where my body was throwing up anything I ate. I had constant dietary pains and a constant cough. The Medicaid coverage I had my whole life offered the bare minimum, letting me go to the ER and the small local pediatrician's office. I stayed consistent with asking my doctors what was wrong with me, and they told me for years that my X-rays showed small lung infections that I was repeatedly given different medications to treat.
Once I turned 15, my younger sister and I were finally and thankfully placed in foster care. We got to stay local and our foster parents, who were only expecting one pre-teen, were generous enough to take us both at the last minute. During this time, there were many big adjustments — from a custody battle for freedom from our birth mother to switching up my school experience. And I kept having severe difficulties with my health. I continued to fight for more of an answer than asthma. I frequently Googled asthma and its severe symptoms, but it didn’t perfectly match what I was going through.
It came to a major tipping point when I started blacking out frequently. Our foster parents took us on a trip to the Virginia Salem Fair, and I went from standing in line for a ride to being rushed to the emergency medic tent. I remember having all the sound go silent in my ears, going from lightheaded to feeling nothing, and everything went blank as I attempted to ask my sister for help. I came to 20 minutes later with an IV in my arm, in front of a big fan, and hooked up to an oxygen tank. My poor foster parents were scared out of their wits, and my sister, my lifeline, was crying and holding my hand. I can’t imagine the fear they felt. I was told to eat and drink more water and go home. I begged my foster parents to not take me to the hospital, knowing they would tell me nothing was wrong. It happened again a few months later at a Lowes, where I took down a whole key display with me.
My foster parents then demanded I get more information. They knew something worse was wrong and were the first adults to fully advocate for me. They listened and understood. They agreed with me when I said something was wrong.
In my junior year of high school, after many court battles, my birth mother gave up her parental rights and my sister and I were finally able to be adopted by our foster parents, who wanted to keep us. We wanted them even more so. I finally was getting the happy ending I always dreamed of, but my body wasn’t going to allow it to be a pretty picture. After many years and hospitalizations, my cough started to produce daily blood. My bowel movements were becoming more painful and inconvenient, no matter what I ate, and the daily allergy pills I was prescribed weren’t helping.
My now-mom started fighting for me with the doctors I visited. “There has to be something else,” she would argue when they would tell me my vitals and blood work looked normal. I had for years told them the same thing, but it was my mom who was finally taken seriously. The doctors started to treat me for different kinds of chronic lung issues such as chronic obstructive pulmonary disease (COPD), chronic bronchiectasis, and even tuberculosis (TB). While I was able to be treated for inactive TB with Rifampin, other medications did nothing or even made certain symptoms worse.
Going into my 20s, I finally got my own health insurance with my employer and my parents continued to support my search for an answer. I never thought watching Five Feet Apart, a movie about two teens with cystic fibrosis, would change my life. I finally saw the experience that I had been dealing with for over a decade on the big screen and it had a name. I immediately called my mom and told her to look up cystic fibrosis. I told her I was confident that it was what I had. We went directly to my doctor and fought for a referral to a pulmonary specialist to get tested. The lung specialist sat down with me and my mom and told us that my blood work did, in fact, show one delta F508 mutation. He didn’t have the resources to test further for more CFTR gene mutations.
Within my first two appointments at UNC Chapel Hill, my suspicions were confirmed through a genetic test and sweat test. I finally heard from my amazing CF doctor and team, “It’s obvious you have CF, I’m so sorry you’re just now finding out.”
Now here I am in my late 20s and have been forever changed by Trikafta and Creon, plus many more beneficial medications. A chronic terminal disease that could have been caught as a child, if only someone had listened to a kid who kept speaking up.
Please listen to the children around you. Please pay attention to what they have to say. Believe them and advocate for them. You never know how you could change their life forever.
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