[OPINION] Life with Noonan syndrome: If others can, then why can’t I?

I am Anne Honeylene Rigor, fondly called Honey by my friends. I have Noonan syndrome. Though it is a common genetic syndrome associated with heart disease, not many people are familiar with it, especially in the Philippines. This condition isn’t discussed much here, likely due to the limited number of documented occurrences. In fact, I was the first case at the Philippine General Hospital to manifest the symptoms.

Noonan syndrome is an autosomal dominant congenital disorder that manifests principal features like a congenital heart defect, cognitive delay, short stature, impaired blood clotting, and facial and other physical deformities. The physical manifestations include an inverted triangle-shaped head, coarse facial features, a wide forehead, neck skin webbing, a small chin, and a shield chest or a broad chest. 

At first look, you may think that I am perfectly ordinary, without any physical issues. However, upon more thorough observation, you will see the physical deformities that make me different from others. 

Actually, I didn’t know the depth of my condition until I was old enough to comprehend what it was. I didn’t even know that I had this peculiarity, but it soon became the reason I got bullied and endured emotional torment. I was constantly teased by my classmates, and even random people, but I just tried to turn a blind eye to the bullying. (READ: Despite deformity, 11-year-old gymnast determined to win gold)

There were times, however, that I couldn’t take the teasing. I remember when I was 9 years old, a boy kept following me and my younger brother while we were walking home. The boy kept singing a made-up song purposely describing my droopy eyes and other features. I felt terribly sad and locked myself in my room for hours. I buried my face into my pillow and sobbed like a baby. I was confused as to why I couldn’t just be like the other kids. 

When my mom heard my crying, she immediately came to my rescue and hushed my troubled heart. “Huwag mo nang pansinin iyon…. Ang pungay ng mata mo, at ang tangos ng ilong, kipot ang bibig.” (Don’t mind him anymore…. You have lovely eyes, and a high-bridged nose, a slim mouth.) I can perfectly remember her words. I was comforted and eventually looked at the positive side. (READ: Dear daughter: Let’s talk about the way you see your body) 

But again the torment never stopped, because there would always be people unaccepting of people like me. There was even a time someone threw stones at me and my companion while we were walking. When you look different, or when you are different, the world cannot accept you.

However, while it was difficult, I never let people’s hurtful words or actions define me. I didn’t want to get affected because I didn’t want my family to get hurt. They love me so much that when they see me get hurt, they feel the greater pain. 

I tried to live as normally as possible. I went to school like everybody else, though I had to stop after elementary because I became physically tired and other complications took their toll on me. I did eventually go back after a few years of rest. I enrolled in the Alternative Learning System instead so I wouldn’t have to follow the rigorous schedule of the regular curriculum. (READ: Superheroes: Teachers of the Alternative Learning System) 

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. Although I was okay with the remarriage, there were emotional setbacks and a longing for my mom. I miss her every day.

I am just blessed that I have a wonderful father who helps me every step of the way. It was hard especially after my mom died, but I knew it would be harder if I didn’t have my family to support me.

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. I help my family – especially by taking care of my sister’s daughter. I also take part in the community. Right now, I am the chapter leader of our organization, the Scoliosis Philippines Support Group. I also try to learn new things for personal development. I upgrade my digital skills. In fact, I am currently learning video editing and other computer-related skills, and at the same time learning different languages (my newest favorite hobby!). (READ: Everyone can make games) 

Every single day is an opportunity for me to realize that life is worth living. 

I have imperfections, but that doesn’t mean I can’t make my life meaningful. This is why my personal mantra is, “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 perfection in this imperfect world. – Rappler.com 

Anne Honeylene Rigor is a responsible daughter, loving aunt, persevering virtual assistant, and community builder who aims to make the world a better place.