Redford teen undergoes risky surgery for chance at a new life

Operations will allow Ramon Aguilar to eat, look more normal

Published On: Mar 20 2012 10:40:46 PM EDT   Updated On: Mar 21 2012 09:23:30 AM EDT
ROYAL OAK, Mich. -

Ramon Aguilar of Redford, Mich., is a typical teenager in so many ways. 

He's learning to drive, likes to play video games, listen to music and update his Facebook page.  But Ramon also faces challenges most teenagers will never understand.   He's never eaten a bite of solid food, and when it comes to blending into the crowd, he doesn't.

Ramon suffers from a rare birth defect called Goldenhar Syndrome.  It can cause several health problems, including deformities on one side of the face.

Doctors don't know what causes Goldenhar Syndrome.  Ramon's fraternal twin Victor is not affected.

Ramon survived heart failure when he was just three years old and has had more than 50 surgeries through the years.

Now 16 years old, Ramon has one wish.

"I just want to be normal," he says.

It's a wish that's difficult for his mother, Angie Atkinson, to hear.

"I know that he wants to be like every other kid. And not being able to play sports and not being able to do a lot of stuff his brother gets to do is kind of hard sometimes," she said.  "Knowing that you're different, that's hard in itself. Knowing how other people can't accept that sometimes, that's hard."

Ramon is willing to risk more surgeries for a shot at a more normal life.

A team of three surgeons at Beaumont Hospital have offered Ramon and his family hope.  In three surgeries over the next two years, they plan to reconstruct Ramon's face to improve his appearance and allow him to eat.  Plastic surgeon Dr. Kongkrit Chaiyasate, neurosurgeon Dr. Daniel Pieper and oral surgeon Dr. Jeffrey Topf will each complete key parts of the transformation.

Chaiyasate said it's a leap of faith for both sides.

"The goal is to improve his look. But the risk is could be that of brain damage. So is risky decision for both sides, parent and doctor," said Chaiyasate.

The night before surgery, Ramon said he was nervous, but he was already thinking of foods he might like to try.

"Maybe some pizza, some chicken, some Mexican food like my mom makes," said Ramon.

VIDEO: Teen learning to eat food for first time

On Jan. 24, Ramon had the first surgery.  It took eight hours.  The team reconstructed his right eye socket to make it symmetrical with the left.  They built him a right cheekbone and reconstructed his jaw to allow him to chew.

In the waiting room, Ramon's mom waited anxiously.

"I've been nervous, scared.  But I guess that's normal," said Angie.  "I'm really excited to see how good this turns out to be."

Three weeks after surgery, Ramon was well on the road to recovery.

"He has therapy four times a week, and they're actually starting from the ground up. Teaching him how to chew, swallow, taste things," said Angie.  "They had him start out small.  They had him chew Cheerios and graham crackers, stuff like that.  But he hasn't liked anything that he's tried."

Chaiyasate said learning to eat will take patience.

"Food and texture, we learn when we're babies, and we learn what to like, what not to like. Ramon has to relearn the whole thing, the whole process of texture, chewing," said Chaiyasate.

As for the physical transformation, Ramon's face is already more symmetrical, but Angie said the biggest change is in his personality.

"He laughs so much more than he used to. I think it's all because he can see the change in himself. He's always looking in the mirror."

To learn more about Goldenhar Syndrome, click here.

To find out more about Ramon’s surgery, click here.