We are different, no one way is the correct way

BUFFALO, N.Y. (WKBW) - “We just heard this little 'hah' sound like a little gasp and I said why isn’t the baby crying,” Lisa Pleasants-Smith, of Williamsville, said.

When Lisa gave birth to her second child in Florida 20 years ago, panic and chaos swept across the delivery room.

“We weren't told for about two hours that they suspected it was Treacher Collins Syndrome,” she said.

Treacher Collins Syndrome affects the development of the face including outer and middle ears. 

Now Jaimeson Pleasants is 20 years old and he is a healthy young man, full of life.

"I was born without cheek-bones as well without a jaw and I was born without the middle and outer ear," Jaimeson said.

When he was only two, his mom received a life changing phone call asking if she would help another mom who had recently given birth.

"The adoption agency called me and asked me if I would be interested in adopting this little baby with TCS— the same syndrome that Jaimeson was born with," Lisa said.

Lisa said yes and that’s when her second son, Anderson came into her life. But Lisa knew there was a difference between Jaimeson and Anderson — so she went to a geneticist. 

"I brought both kids and sat them down next to each other and I said now here is why I think Andy has Goldenhar Syndrome."

She was right. Like TCS, Goldenhar Syndrome affects facial development. But unlike TCS,  it also affects his lungs, neck and spine.  Jaimeson and Anderson both consider themselves Deaf Hard of Hearing and Anderson is non-verbal. 

At the age of 12, Anderson received neurosurgery when he was 12 years old because he was born with a tethered spinal cord.

Both brothers have had dozens of surgeries for jaw reconstruction and other craniofacial surgeries. 

"I was born without a chin which causes issues with the airway," Jaimeson said.

"My body, including my face, the whole left side is smaller than the right and i don’t have a jaw," Anderson said.

Despite being born with different craniofacial syndromes, Anderson and Jaimeson both share similar challenges with breathing, feeding, eating and speech.

In addition to the health issues, Jaimeson and Anderson’s appearance has also led to bullying.

"That boy has an ugly face or why are you wearing a mask or we can’t have what you have so you have to go away," Jaimeson said.

"Its very difficult to walk into a school that I don’t feel like I fully belong," Anderson said.

Both will graduate from Williamsville East High School in June, then they’re off to RIT. Jaimeson will major in mechanical engineering and Anderson will study political science.

Anderson had a wish granted through the Make-A-Wish Foundation in April and performed with Twenty-One Pilots. He is looking forward to speaking at the TEDx Youth Buffalo conference on March 8th.

 

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