Alberta boy with facial deformity in New York City for second operation

The mother of an Alberta toddler with a rare facial deformity is hoping that a surgeon in New York City can repair more than just her son’s swollen face.

The mother of an Alberta toddler with a rare facial deformity is hoping that a surgeon in New York City can repair more than just her son’s swollen face.

Protecting the two-year-old boy’s loving, sensitive heart is really at the core of why Nicole Champagne hopes that one day her son, Maddox, looks like every other child.

The family was back at a hospital in the United States Monday as Maddox received a second operation to repair a huge swelling on his left cheek and mouth.

In May, Dr. Milton Waner, co-director of the Vascular Birthmark Institute of New York, at St. Luke’s-Roosevelt Hospital Centre removed a large growth that had closed the boy’s left eye.

“He looks very, very good right now,” Waner said Monday. “I don’t think his parents recognized him.”

Maddox’s malformation, called lymphatic cystic hygroma, caused large tumours to form on the left side of his face.

But it’s the invisible scratches that are threatening to emerge on her little boy’s self-esteem that really hurts Champagne, 29.

“There were lots of children (who) would stare at him, lots of people actually that would stare at him,” she said as she paced the floor in a hospital waiting room during her son’s surgery, which took several hours.

During outings to the park in Edmonton with Maddox and his father, Mike Flynn, 34, Champagne noticed that her son was starting to give her concerned looks when other children acted frightened of him.

“When Mike and I took him out to the park there were some kids who would start crying and would run away from him. He was starting to notice and wondering why everybody was looking at him differently,” she said.

Those motherly instincts kicked in and Champagne found herself growing more protective of her son and the emotional effects such rejections were having on him.

“He has such a great spirit and he’s so strong and loving and charismatic. I just don’t want anything to ever damage him, damage his soul,” Champagne said.

The surgery Monday was to remove the growth, which has been preventing the toddler from learning to speak.

Jeff Jacomowitz, spokesman for St. Luke’s-Rooosevelt Hospital, said the operation was highly successful, but it’s likely a third will be needed.

Having his mouth stretched wide by the facial swelling has also caused the boy to drool quite a bit, because he can’t entirely close his mouth, Champagne said. She was also hoping that this latest surgery would help with that.

“I’m just hoping that…his face will be returned to normal so he can look like every other kid.”

In a posting on a Facebook site dedicated to his son’s medical treatment, Mike Flynn called the boy’s surgeon an “angel”, adding that the doctor was going to “finish this miracle he’s doing” in order for Maddox to live the life he deserves.

Because the skin of the boy’s face has been stretched so much by the facial deformities, he’ll likely have to travel back to New York City to have loose skin tightened on his face, Champagne said.

The two operations were expected to cost over $100,000. Donations from across Canada, the United States and Europe have poured in and she said their latest estimate was that roughly $250,000 has been raised to pay for Maddox’s surgeries.

“The gratitude that I have is beyond words,” Champagne said.

Any money that is left over after the surgeries will likely be donated to Dr. Waner’s New York-based foundation that helps to pay for such surgeries for families who can’t afford it, she said.

When the boy’s family first sought help, doctors in Edmonton told the couple there was nothing they could do for the boy but told them about Waner, who specializes in such surgeries. Television stories featuring the laughing, energetic little boy shooting a puck with a hockey stick were beamed around the world and grabbed at the heart of Edmonton Oiler player Gilbert Brule.

He donated $10,000 to the boy’s trust fund after hearing the family’s story.

By late Monday afternoon, the Facebook site dedicated to Maddox boasted messages of encouragement from more than 1,000 people. It also featured photographs of a cheerful, swollen-cheeked Maddox grinning at the camera and posing with other children.

“Wow! Look at all your fans Maddox. We are very inspired by your special journey and are amazed by your strength and passion to keep moving forward,” wrote Santana Hawman. “You’re a happy little guy and we are all very proud of you.”