I don’t look like other teenagers because I have Treacher Collins Syndrome (TCS), explains Zack Hodge Takacs, 16, who communicates through his computer. He writes about what it’s like to look and talk differently, especially during the pandemic.
Zack Hodge Takacs opens up about life with Treacher Collins Syndrome 3:40
This First Person article is the experience of Zack Hodge Takacs, a 16-year-old in Ottawa with a rare genetic condition. For more information about CBC’s First Person stories, please see the FAQ.
I don’t look like other teenagers because I have Treacher Collins Syndrome (TCS). TCS is a rare genetic condition that can affect how your face is formed. It can cause ears, eyelids, cheekbones and jawbones not to develop normally.
For me, having TCS means my face looks different and I don’t communicate like other kids do.
I have a small chin, both sides of my nose are blocked and I need a tracheostomy tube to be able to breathe. I don’t eat food through my mouth but instead use a special tube that goes into my stomach.
I don’t have ears and I wear a hearing aid to hear. I also cannot speak clearly so I learned other ways to communicate with people.
Let’s talk about my face
Because I couldn’t talk, when I first started school I learned sign language. But the teacher and other kids at my school didn’t understand it, so I had an adult (either an educational assistant or my nurse) translate for me. And because I used sign language, people thought I couldn’t hear them, but with my hearing aid I can hear pretty normally.
I used to wear a name tag in class that said “Talk to me, I can hear you,” just to remind kids I can hear them and even though I can’t talk to them, they can still talk to me.
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When I was about eight years old, I finally got a program on my computer I could use to talk for myself. It made things easier, and I could be more independent. But other people still have to be patient and wait until I type in what I want to say.
One of my friends recently learned sign language from the internet so he could talk to me. He is a good friend and I’m glad we can now talk, but I only see him at school so I haven’t seen him for over a year.
Because of COVID-19, my parents decided it would be best if I did online learning at home. It is difficult for me to wear a mask because my face is small and I don’t have ears for the loops (though I just got a special one from CHEO that now fits).
It is normal for me to cough a lot during the day, especially when I eat my lunch, and my parents thought this would probably cause people to wonder if I have COVID-19. My parents were also worried I might get the virus easier because I have a tracheostomy.
I want other kids to come say hi to me without being afraid or feeling like I’m not a kid just like them.– Zack Hodge Takacs
I know a lot of kids struggle with doing school at a distance. But for me, it went really well and I like the online classroom. I could chat using my computer, by writing on paper, or using my iPad to communicate. That made it easier to say what I want during class.
Only a few of my friends from last year were in my online class, but I met some new kids. It’s good because growing up, many of my friends were adults, and school is the only time I really get to be with kids my own age.
After school, I don’t hang out with other kids except my 18-year-old sister Zoe. We play silly games together.
Even if I can’t talk to other people, I still have fun and like being around people. Since I was little I have always wanted to be part of the conversation, and I would want my mom to translate what I was saying.
I don’t remember kids laughing at me or making fun of me but my mom tells me sometimes kids would act strangely when they saw me.
Younger kids would walk up to me and stare at my face, and my mom would have to say something to get them to stop. Sometimes they would ask a question about why I look the way I do, and my mom would tell them I was born that way. We all look different.
If I hear someone say these things, it doesn’t bother me because I know I am loved by the people who know me.
I don’t look like other 16-year-olds but I can do a lot of the same things as other kids, and I am a nice person. I want other kids to come say hi to me without being afraid or feeling like I’m not a kid just like them.