(NEW YORK) — When 5-year-old Maddox Perales poses for a photo, he has to hold up his cheeks as he yells “cheese.” Maddox’s unusual smile is a result of a neurological disorder called Moebius syndrome.
Maddox was diagnosed as an infant with the disorder, which primarily affects the 6th and 7th cranial nerves and can cause severe facial weakness or paralysis, according to the Moebius Syndrome Foundation.
The condition left him with facial muscles so weak he could not feed himself or even smile. He also could not blink or move his eyes laterally, meaning he had no peripheral vision.
In the five years since he was diagnosed, Maddox’s mother, Danielle Templer, has worked with speech and physical therapists to develop Maddox’s speech and eating ability. Even though he can now eat, read and talk, he is still is unable to smile.
“He’s so astute and I don’t want people to perceive him as not being smart,” said Templer. “I don’t want people first…to judge a book by a cover before they [know him.]”
Templer said preschool and pre-kindergarten classes have been hard for the 5-year-old because other kids don’t understand why he doesn’t smile. Even Templer had to figure out what Maddox’s laugh sounded like so she could understand when he was happy or sad.
“It makes a big, big difference,” said Templer of the ability to smile. “It’s instrumental. It’s a bond. It’s a lot of things, a smile. It does so much for you.”
While Maddox can still smile by manually holding up his cheeks, Templer is looking for a permanent solution. One possible answer is specialized surgery to treat facial paralysis.
Templer is hoping to take Maddox to be treated at the Facial Paralysis Program at the Hospital for Sick Children in Toronto. The program helps to treat children like Maddox by grafting nerves and other muscles from other parts of the body into the facial region through multiple surgeries to try and animate the facial muscles.
Templer said she’s raised more than $21,000 but estimates the surgery and following care will be approximately $100,000. She’s currently raising money in an online fundraiser.
For Templer, the surgery isn’t just about having Maddox smile. She hopes it will help with a speech impediment that can make him unintelligible to people outside of his family and make it easier for him to interact with new people.
“This is the card he was dealt. We’re going to play our ace high,” said Templer of her plan to fund Maddox’s surgery. “[For Moebius syndrome kids], we smile with our hearts. He’s a normal boy but, gosh, it’s so important to smile.”
Copyright 2014 ABC News Radio
Heather Simonsen, KSL.com
Sam Penrod, KSL.com
Susan Scutti, CNN