This first-person article is the experience of Zack Hodge Takacs, a 16-year-old boy with a rare genetic disease in Ottawa.For more information about CBC’s first-person story, see common problem.
I don’t look like other teenagers because I have Tretcher Collins Syndrome (TCS). TCS is a rare genetic disease that affects the way the face is formed. It can cause the ears, eyelids, cheekbones and jaws to fail to develop properly.
For me, having TCS means that my face looks different, and I don’t communicate like other children.
I have a small chin, my nose is blocked on both sides, and I need a tracheostomy tube to breathe. I don’t eat food through my mouth, but use a special tube to enter my stomach.
I don’t have ears, I listen with a hearing aid. I can’t say it clearly, so I learned other ways to communicate with people.
Because I can’t speak, I learned sign language when I first started school. But the teachers and other children in my school didn’t understand, so I asked an adult (education assistant or my nurse) to translate for me. Because I use sign language, people think I can’t hear them, but with hearing aids, my hearing is normal.
I used to wear a name tag in class with the words “Talk to me, I can hear you”, just to remind the children that I can hear their voices, even if 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 had a program on my computer that I could use to speak for myself. It makes things easier and I can be more independent. But others still have to wait patiently until I enter what I want to say.
A friend of mine recently learned sign language from the Internet so that he can talk to me. He is a good friend and I am glad we can talk now, but I only met him at school, so I haven’t seen him for more than a year.
Due to COVID-19, my parents think it is best for me to study online at home. It is difficult for me to wear a mask because my face is small and I don’t have earrings (although I just got a special mask that fits now from CHEO).
It is normal for me to cough frequently during the day, especially when I am eating lunch. My parents think this might make people wonder if I have COVID-19. My parents are also worried that I might be more susceptible to the virus because I had a tracheotomy.
I hope other children come to say hello to me without being afraid or thinking that I am not a child like them.-Zach Hodge Takaki
I know that many children are struggling to go to school at a distance. But for me, it went very well, and I like online classes. I can use my computer to chat, write on paper, or use my iPad to communicate. This makes it easier to say what I want in class.
A few of my friends were in my online class last year, but I met some new kids. This is good, because many of my friends were adults when I was growing up, and school is the only time I really spend with kids of the same age.
After school, with the exception of my 18-year-old sister Zoe, I do not hang out with other children. We play boring games together.
Even if I can’t talk to others, I am still very happy and like to be with people. I have always wanted to be part of the conversation since I was a child, and I hope my mother translates what I say.
I don’t remember the children laughing at me or making fun of me, but my mother told me that sometimes children behave strangely when they see me.
Young children would come to me and stare at my face, and my mother had to say something to stop them. Sometimes they would ask me why I look like me, and my mother would tell them that I was born like this. We all look different.
If I hear someone say these things, I won’t be bothered because I know that I am loved by people who know me.
I don’t look like other 16-year-old children, but I can do many things like other children, and I am a very good person. I hope other children come to say hello to me without being afraid or thinking that I am not a child like them.