By Stephen Young
By Stephen Young
By Stephen Young
By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
Emily had begged her mother to let her miss school to cheer her friend on. With the school's blessing, Emily's mother has decided to let her go. She rides on the bus with Kathryn and the other special-ed students from McKinney. After a picnic lunch in the stands, Kathryn's teacher comes to collect her for the softball throw. She refuses to leave until Emily comes with her, which Kathryn indicates by tugging on Emily's arm.
Two weeks later, another Special Olympics event is held, this time in Allen for the McKinney and Allen areas. Wearing a Special Olympics T-shirt she got at the previous event and a cloth angel pin Kathryn's mother gave her, Emily again rides the bus with the special-ed children. Another boy from Emily's class has also come along, and Emily tries hard to suppress her jealousy.
While waiting for the events to start, Kathryn is wild. She runs all over the field and under the bleachers, with Emily and her other classmate in tow.
Emily's mother, who has accompanied Kathryn's mom for today's events, tells Emily there is another girl with Angelman syndrome here, though she is much younger than Kathryn. Anxious to meet her, Emily clasps Kathryn's hand. Together they walk over to meet the girl, another silent child with a constant smile.
When Kathryn's turn to run the 50-yard dash comes, Emily stands behind her, her arms encircling Kathryn's waist to make sure she doesn't begin until the starter pistol goes off.
Kathryn runs down the track on her tiptoes, beaming as she waves to the small crowd gathered on the sidelines. She comes in second, and Emily, who has run over to the finish line, greets her with a hug.
It is only in retrospect that Paula and Bill Benton recall there was anything out of the ordinary about Kathryn's early months.
She spit up a lot. She refused to sleep on her stomach, rolling onto her back from the time she was only a few weeks old. The back of her head was abnormally flat, but the doctors assumed it was due to her sleeping preference. And she had flaxen hair, the color of corn silk, which was odd because both sides of the family had dark hair. (Though Kathryn's hair would later turn dark, light hair can be an early sign of Angelman syndrome.)
Initially, none of these things aroused much concern in the Bentons, who live in Van Alstyne, a Grayson County town north of McKinney. In fact, Kathryn was such a good baby, sweet-tempered and docile, they took her everywhere, and people always remarked how lucky the new parents were.
But by Kathryn's eighth month, something just wasn't right. A less persnickety pediatrician might not have even picked up on it. But something the Bentons' doctor couldn't pinpoint bothered her.
Kathryn wasn't gaining weight, so her doctor recommended Paula stop breast-feeding and switch to formula, which only made things worse.
Kathryn was late to sit up, so her doctor sent her to a physical therapist. After a few sessions, Kathryn no longer needed to go.
Then Bill came home one day from work at his real-estate and insurance company and found Kathryn looking dazed. The pediatrician thought Kathryn might have had a seizure and sent her to a neurologist who did two EEGs but found nothing significantly wrong. He told the Bentons if they came back in five years to tell him that Kathryn was a straight-A student in the talented-and-gifted program, he wouldn't be surprised.
But by age 2, Kathryn still was not walking or talking. Doctors lumped her into the vague category of "developmentally delayed," and the Bentons enrolled her for the next two years in the Richardson Development Center.
"It was one thing after another," Paula recalls. "The doctors were never satisfied, but they couldn't put their finger on it. If she was Downs syndrome, the doctors would have known from the minute she was born. We would have been blown away, but we would know where to go. For us, the first seven years of Kathryn's life were an emotional roller coaster."
In 1991, when Kathryn was 7, a former teacher of hers from Richardson sent the Bentons an article about something called Angelman syndrome. "It was like I had written the story myself," Paula says.
The article detailed the findings of an English pediatrician named Harry Angelman who, in 1965, first described in the medical literature three children in his practice with startling similarities. They walked with a stiff, jerky gait. They did not talk but were always smiling or laughing. They frequently suffered from seizures, hyperactivity, and sleep disorders.
Dr. Angelman was convinced all three children had a similar affliction, which he dubbed the "happy-puppet syndrome." Though other similar cases were published, the condition was believed to be very rare, and many physicians doubted its existence.
Dr. Angelman did not seriously investigate a cause, or search out the extent of the affliction, until he was on vacation years later and went into a museum, where he stumbled upon a 17th-century Italian painting of an angelic child with light hair and eyes. In the corner of the painting was a smaller painting of a marionette puppet. He was convinced the similar traits shared by his three similar patients was more than mere coincidence.