Treacher Collins Syndrome

Meet Max, “the bravest man you’ll ever meet,” as his older brother Ian endearingly calls him. Max is actually an 11-year-old boy, but Ian is learning English. We think Ian’s vocabulary is very fitting, as Max really has the courage of someone well beyond his years.

Max was born in Quito, Ecuador, its capital city. Shortly after his birth, the pediatrician told Max’s family that he had bilateral microtia, very small ears with no ear canal, which affected his ability to hear. His mother, Rosa, explained that they felt lost with the diagnosis. They didn’t know anything about microtia or if anything could be done to treat it. They didn’t know about implants or hearing aids. That was the greatest of their concerns: to know if he would be able to hear and also to talk.

They were also told that Max had Treacher Collins Syndrome, characterized by a malformation of the ears, eyes, cheekbones, and chin. Max’s family was relieved to know that Treacher Collins Syndrome would not affect his brain, as this was a condition that they had never heard of.

Though Max and his family live an urban lifestyle, Quito is very different from New York City. Ian shared with a smile that the buildings aren’t as tall, for example, when their family came together for Max’s treatment. But the biggest difference, especially for Max’s family, would likely be access to medical experts who were knowledgeable in facial birth deformities like Treacher Collins Syndrome and microtia.

Max’s family was led to the Little Baby Face Foundation as if by fate. One day, Max’s grandmother was crying in a hardware store buying some light bulbs when the salesperson asked if she was ok. On the other end of the phone, Max’s mother had just told her that Max was in critical condition in the ICU. Max was just 8 years old at the time, coming out of his first surgery in Ecuador. The salesperson had heard a story about a child with a similar condition who was treated by Dr. Romo, founder of the Little Baby Face Foundation. Max’s parents immediately submitted an application to receive treatment with us. Rosa’s brother was living in New York, so he also helped by making calls to the Foundation.

We are so grateful that Max’s family found us. He is currently in the second stage of his surgery for microtia. His bilateral microtia will be repaired by Dr. Romo, one of the most skilled plastic surgeons in the world, who also happens to be our founder. Dr. Darius Kohan will be performing Max’s bone-anchored hearing aid (BAHA). Max’s treatment will allow him to hear, a real victory for him and his family.

We are so honored to be a part of Max’s story. We know that receiving treatment is going to be a life-changing, transformative experience for Max, and we are so excited for him and his family.

 

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