Treacher Collins syndrome. There’s a good chance you haven’t heard of it, but if you have – you’ll know how much it can affect its sufferers.
If you don’t belive me, just ask Michael Goodman.
Perhaps you’ve seen the movie Wonder, depicting the story of fifth-grader August Auggie Pullman, a boy born with Treacher Collins syndrome who struggles to cope with life in a private middle school.
The heartwarming and sad story, based on the New York Times bestseller, gives a great and emotional insight into how it is to live with facial differences and be bullied for it.
Michael Goodman, a 41-year-old pediatrician from Indianapolis, Indiana, is a real-life Auggie, in as much as he knows what it’s like to have to cope with Treacher Collins syndrome growing up.
Treacher-Collins syndrome alters the development of bones and other tissues in the face, it can cause deformities and malformations in the ears, eyes, cheekbones, and chin. In short, those who suffer from it can be left with facial disfigurements, naturally making everyday life a more complicated affair than it should be.
The Genetics Home Reference site says that the condition affects one in 50,000 people. It’s caused by mutations in a specific gene and is incurable.
Like many other children who live with the syndrome, Michael was bullied from a young age. Sadly, he couldn’t even walk down the halls of his school without getting tormented by evil students.
His elementary years were okay, but middle school and high school were a nightmare. He was left with no self-confidence or self-worth.
“Middle and high school were really, really rough. I got teased every day pretty much, and it really made me want to not go to school some days or there were days I was hoping certain classmates of mine would not show up or be absent so I wouldn’t have to deal with them,” he told The Tribune.
Fortunately, Michael managed to pull through – he refused to be defined by his syndrome.
“If any of you have a chronic medical condition or something you’re always going to the doctor for, please do not let that define who you are,. Make it a part of you, but don’t make it all of you because if I defined myself by Treacher Collins, I’m not talking to you today, I can guarantee you that much,” he says.
Today, he works at Riley Hospital for Children at IU Health.
Awareness
Awareness of Treacher Collins syndrome is something that needs to be improved, which is why people like Michael are aiming to share personal experiences in the hope of enlightening others.
Prior to the release of Wonder, he opened up on Facebook about the condition, and we think it’s a read all should undertake …
Michael’s post was shared by over 3,000 people, and serves to highlight the troubles people who suffer from the condition can experience.
“My name is Michael Goodman and I’m a 37 year old pediatrician. I love ice hockey, ice cream, and quite possibly Maggie on The Walking Dead.
I also have Treacher Collins Syndrome, like Auggie has in Wonder. The mutation responsible for the syndrome affects development of the external ears, middle ear bones, cheek bones, and lower jaw. I have experienced 75% of the social struggles Auggie dealt with, plus attempted suicide twice my senior year of high school in addition to a family not allowing me to take care of their child as a physician due to my appearance and my speech.
Words can and do hurt.
People with facial deformities want to be treated like any other normally developed person: respected, even loved
This is why Wonder needs to be read, spread, and shared. In her book, R.J. Palacio has done an amazingly powerful job of describing what it’s like to be a kid with a facial difference.
Please read the book and educate yourselves, your children, and #ChooseKind. And see the movie.”
What a brave man Michael Goodman truly is, and what a fantastic inspiration he is for anyone else living with a facial deformity.
You’ve accomplished an incredible task…becoming a pediatric ICU specialist.
Plus, you’ve had to overcome such emotional and mental abuse by your peers in your early teens, etc…life is a struggle but apparently, all your past experiences, both negative and positive, have created one incredibly fascinating gifted man.
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