< Patient Stories

A Mother’s Review of Wonder and the Importance of Kindness

When Anniston was born in 2015, we had no idea she was going to be born with Treacher Collins Syndrome. Although I was curious as to what type of syndrome she had, I thought she was so beautiful. Actually, the first thing I noticed were her adorable dimples. When they placed her in my arms for the 30 seconds I was able to hold her, I cried but not because she looked different than us, but because I was scared for her. We just wanted her to be okay.

They airlifted her to ACH & she was in NICU for about a month. At two days old she had her first surgery to give her nasal passageways because they were blocked off by bone. She had to have this same surgery several times over the first few months because they kept scarring over. She received two Baha hearing aids at 22 days old and was able to hear clearly for the first time, a moment we will never forget when her eyes opened real wide at the sound of our voices.

In all, Anniston has been to the operating room about 10 times. Honestly, we've lost count and it never gets easier when she's wheeled past those double doors. Her recent surgery was a jaw distraction to move her jaw forward. She still has rods in her jaw and will get them removed in January. Despite her many obstacles, she is the funniest, sweetest, loving, and smartest two year old. Anyone who knows her, knows that she is truly a ray of sunshine.

We are so, so excited about the Wonder movie. It is about a boy with the same condition as Anniston. This is going to bring so much awareness for Anniston and other kids who have facial differences. This brings me hope that more children and adults will be kind to those who may appear different than them.

My advice to all parents is to take the time to teach your children how to treat everyone with kindness. You don't want your child to be the one responsible for someone else's sadness. From a mom who has a child with a facial difference, my tip is to never just stare. We understand you or your child may be curious and that is totally okay. Just teach your child that being different is more than okay. 

A good way to describe hearing aids is by telling them that just like people need glasses to see, some people need hearing aids to hear. Encourage your child to say hello.

A good way to break the ice if you are curious is to ask what the person's story is instead of asking what is wrong with them or what is wrong with their face. Be the change you wish to see in the world. I encourage everyone to see the movie Wonder!