Our HOPE team at Genesis Foundation looks to stay connected to people within India and across the globe who share their personal experiences about Congenital Heart Defects. Whether it is a mother of a child suffering from CHD or the child itself – everyone has a story to tell. Each story helps us understand the reality of a survivor or a parent who struggles with this disease. It isn’t just all medical – there are emotions, different hardships family face. With the children we support – it is a mix of emotional and most importantly financial. The parents of the kids we support have to sometimes hold onto their emotions because they have more pressing issues like getting funds together for congenital heart disorder treatment or else they will lose their child.
Lola’s story is a particularly inspiring one – she wears her scar with pride, a true modern-day female teen warrior.
Ever since I could comprehend my heart condition, I’ve been aware of what it would be like to live with it. I remember being in the 2nd or 3rd grade and having to remind my Physical Education teachers of my condition and what it consisted of, to protect myself from agitation or fast heart rate- which I had been taught to measure since I was smaller. I had never let my condition stop me from doing anything that I had ever wanted to do. I was very active in class, I loved performing in theater, and I loved doing everything that anybody else could do; I just had certain restrictions that I needed to comply with.
When I hit the 7th grade, and I was 12 years old, I thought I was invincible. I started growing more tired, and more fatigued as the days went by. During one scary scenario, my lips turned plum, and my breaths became short, and this was my first sign of cardiac heart failure, which I had been so afraid of during all my visits to the cardiologist. I began to use oxygen soon after that experience, and I carried it proudly. Some people would see it as dragging around a machine or carrying a burden, but to me, that machine was my best friend because it held me close to life. I traveled to Minnesota to receive open heart surgery, and I do not recall being sad, or afraid at any point during my congenital heart disorder treatment and recovery time. I was often the one who kept my family members upbeat and smiling because I knew I had so much more to accomplish after my surgery, and I was going to make it out fine.
When I got back to Puerto Rico, I decided that I wanted to be a source of inspiration and faith for other people going through tough moments in different areas of their life. I spoke of resilience, of hope, of faith, and the importance of telling others your story. I then wrote a book to talk about physical and emotional scars that we must learn to love and accept, which is incredibly crucial during teen years, as I came to notice.
I've made it a point to show that my heart condition does not define the person I am today, and it does not limit me. Having a heart condition is probably one of the things I am most proud of and one of the things that I am most grateful for, and I would never change any step of the process. I have gone through pain, which taught me to be more resistant. I have been sad, which taught me what things are worth crying for. And I have been sick, which showed me how beautiful it is to be alive, to be blessed, and to have such a fantastic longing to share my secret to life and happiness as a Teen with a congenital heart defect.
I make it a point to tell everyone that I am a teen, because we tend to associate CHD's with adults, and babies, and I want to be that in between because I know that people my age understand people my age. I have not restricted myself of all the fun of being a teenager because I have a heart condition. Instead, I plan to prove that adolescents with heart conditions can have just as much fun as someone without a heart condition. I party on a regular basis, I dance, I do exercise, and I stress about schoolwork, just as much as anybody without a heart condition. But I don’t do it to mask my heart condition, or to make myself believe that I am normal. I am not normal, teens with CHD’s are not normal. We are amazing. We are warriors, we persevere, and we want the same things that others wish for. We just do it while creating awareness, and rising despite our differences, our struggle, and our condition.
-Contributed by Lola Montilla, CHD Advocate
You can also visit her inspirational website -