I am Anne Honelyne Rigor fondly called Honey by my friends. I have Noonan Syndrome. Though it is a common genetic syndrome associated with heart disease still, not many people are familiar about it especially in the Philippines. In fact, I was their first case at Philippine General Hospital (PGH) to manifest the symptoms.
At some points, the knowledge of this condition is not very much likely discussed due to the limited number of documented occurrences. And worse, people don’t know that it exists.
Noonan Syndrome is an autosomal dominant congenital disorder that manifest principal features like congenital heart defect, cognitive delay, short stature, impaired blood clotting, and facial and other physical deformities. The physical manifestations include inverted triangle-shaped head, coarse facial features, wide forehead, neck skin webbing, small chin and shield chest.
At first look, you may think that I am perfectly ordinary without any physical issues however as you give a thorough observation you would see all these physical deformities that make me different than most.
Actually, I didn’t know the depth of my condition until was old enough to comprehend what it is. I didn’t even know that I have this peculiarity which somehow became the center of bullying and emotional torment. My classmates would tease me for looking different but I tried to keep a blind eye.
I continued my primary years and finished it. However, I stopped schooling after I graduated from elementary because I became physically tired and other complications tolled on me. I stopped but eventually went back after a few years of rest. I enrolled in ALS (Alternative Learning System) so I didn’t have to attend the rigorous schedule of the regular curriculum.
I was back on my feet again but this time I had another set of challenges to get through. My mother died and my father remarried. All though I was ok with the remarriage, but there were emotional setbacks and longing that I felt for my mom. I miss her every day.
I am just blessed that I have a wonderful father who helps me through every step of the way especially after my mom died. It was hard but I knew it could be harder if I didn’t have my family to support me all the way.
Until now, I am weak and I still have my physical imperfections but I know I can conquer life with my family and with God. Every single day is a day of opportunity for me to realize that life is worth living. I have imperfections but it doesn’t mean I can’t make my life meaningful. This is why I have this personal mantra I live by everyday, “If others can, then why can’t I?”
Life is beautiful if we see it that way. All we have to do is to see the perfections in this imperfect world.