Champion of optimism

Disability: Battling a rare genetic disorder, Scott Summe has an upbeat spirit that has won him a spot on the Children's Miracle Network's telethon.

April 04, 2001|By Lisa Respers | Lisa Respers,SUN STAFF

Scott Summe's face draws people's attention, but it's his personality that holds it.

Scott, 16, of Columbia, has Crouzon's syndrome, a rare genetic condition that causes skull bones to fuse before birth. And while his appearance sometimes causes stares, his jovial manner has landed him many admirers and a spot representing Maryland as one of the Children's Miracle Network's Champions Across America.

"He's a great kid," said David Norton, vice principal at Mount St. Joseph High School in Baltimore, where Scott is a sophomore. "We're very lucky to have him."

Scott was chosen by the Johns Hopkins Children's Center to join children with disabilities from across the country and Canada for the annual Children's Miracle Network Telethon in June. As one of the Champions, Scott will travel to Washington today to meet the president and first lady and then fly to Orlando, Fla., tomorrow for a taping of a broadcast that will be shown as part of the telethon.

It's a gig that comes naturally to the boy who at 10 was a seasoned speaker, going to Howard County schools and sharing what life was like with a disability. Those appearances led to speaking engagements at corporate conventions and previous telethons.

"He's just so glib in front of the camera," said his mother, Janet Ayres, who, with her husband, Jim Summe, has accompanied Scott on his public appearances. "When they talked to me, I would be kind of stiff, but he's totally relaxed."

His parents respond modestly to the suggestion that they are the reason Scott has stayed so positive. Far from shying from the disease, Scott can rattle off the exact location of the single gene that shaped him and the particulars of the research that led to that discovery.

Crouzon's occurs in one of about every 50,000 births and causes facial deformities. Scott was born with a pear-shaped head, protruding eyes, narrow nasal passages that made breathing difficult and jaws that couldn't bite.

Shortly after birth, Scott endured surgery to open up his skull and give his brain room to grow. The condition was a shock to Scott's mother, who had an uneventful pregnancy.

"It was a total surprise," Ayres recalls. "It was a total shock, but we just got on this roller coaster and have been whizzing away ever since."

That's partly because of Scott, who refuses to let his disorder slow him down. His parents say he has been outgoing since he was a baby and has stayed upbeat despite the pain of 21 surgeries and the knowledge that more await him.

"I think that for a child who has facial differences, it's very helpful for him to be gregarious," his mother said. "He's dealt with it much better than I would have."

Dealing with it has at times meant stares from strangers and insensitive comments. But ask Scott what it's like to have the disorder, and he will promptly answer "fun."

"It's allowed me to do various activities and meet a lot of people," Scott said. "It can also seem hard at times with the surgeries and the rehabilitations, but it all balances itself out."

Life is full for him, he says, with his hobbies of chess, writing plays and making things out of duct tape. At school, he is popular - the kid who, disappointed with the lack of interest in the wrestling team he managed, put on the school mascot uniform to help draw more of a crowd.

"He's always joking with the other students, and he makes them feel very comfortable," said Elizabeth Pease, Scott's French teacher. "There's something in his aura that puts everyone at ease."

Dr. Ethylin Wang Jabs, a geneticist and director of Hopkins' Center for Craniofacial Development and Disorders, said Scott and his family are exemplary. Scott was one of the original volunteers who participated in a study that helped to identify the gene for Crouzon's, Jabs said.

"They have been very active and supportive of other families who are in similar positions," Jabs said. "Scott is just really well adjusted, and he's doing anything that any other kid of 16 would do."

For Scott, the chance to represent Maryland means more than just a free trip for him, his parents and his 18-year-old sister, Kelly. It's an opportunity to make new friends and say thanks to some old ones.

"I'll be meeting kids who have other disabilities and working with them to raise money for the hospital," Scott said. "The hospital has given me a lot, and I feel like I should give something back."

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