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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.
Lisa Respers
SUN STAFF
Published on April 4, 2001
© 2001- The Baltimore
Sun
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."
Among friends: Mount St. Joseph sophomore Scott Summe (center)
enjoys lunch with friends at the school. Scott, born with Crouzon's
syndrome, will represent Maryland as one of the Children's Miracle
Network's Champions Across America.
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Last Updated:
6/14/02
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