By Stephen Young
By Stephen Young
By Stephen Young
By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
It wasn't until 1985, when genetic testing had progressed more fully, that a team of researchers Angelman worked with in Florida detected a slight deletion in the 15th chromosome of many of these patients.
Since 1985, 700 children in the United States have been diagnosed with Angelman syndrome, though scientists believe the condition frequently goes undiagnosed. The numbers are probably much higher.
From the article, the Bentons learned about the Angelman syndrome Foundation, which has a monthly newsletter, a yearly conference that the Bentons have attended ever since, and even a support group run by and for siblings--The Halo Club.
The Foundation has provided the Bentons information and an extended network of support and guidance. Certain ages have been harder than others, though Kathryn, a perpetually busy toddler, is never easy. When she was younger, one of her teachers nicknamed her "Seek and Destroy." She's not intentionally destructive, she just has the dangerous combination of curiosity and a short attention span.
Kathryn also must be watched constantly. Paula once turned her back on her daughter for an instant, and Kathryn stuck her hand in hot grease then put her hand to her mouth. With an exceptionally high pain threshold, Kathryn hadn't realized she was injured.
Another time, she fell off a trampoline, and it took the Bentons two days to realize she needed medical attention. Even the doctors, who watched Kathryn walk around the emergency room waving at people, were surprised the X-rays showed her wrist was broken.
Another time, Kathryn thought she was helping her mother do laundry. In the time it took Paula to walk from one end of her house to the other to put away some laundry, Kathryn had poured a bottle of Windex and a bottle of bleach into the washing machine.
"Her personality is so neat, though," Paula says. "She is so loving. With all Angelman children, their favorite thing is other people."
Holly Clemons, Kathryn's special-ed teacher, agrees: "Kathryn makes you feel like you're the most important person in the world to her. That's an incredible gift."
When Kathryn became too old for the infant-development program, she needed to start grade school. Van Alstyne had no special-education programs, so the Bentons were sent to Sherman. Normally outgoing and fearless, Kathryn hated the class, which had lumped all different handicaps together. She would cling to her mother when Paula tried to leave.
The Bentons put Kathryn in a regular classroom in Van Alstyne for the next year. "The school tried its best, but she was a lot to handle," Paula concedes.
Finally, the Van Alstyne principal recommended Kathryn be transferred to the McKinney school district, where she's been for the past seven years. It has been a good fit, but this past year has been the most remarkable for Kathryn.
"At the beginning of the school year, I knew I wanted Kathryn to be included in a fourth-grade classroom," Clemons says. "I wanted her to have the opportunity to model behavior and to make friends. None of us thought it would be that meaningful, or [knew] the extent to which a friendship would develop."
At the beginning of the year, Kathryn joined Mrs. Davie's class for music, art, and gym. Then Mrs. Davie requested to have Kathryn for a longer portion of the day. Fearing her daughter would be too disruptive, Paula Benton was hesitant at first and wondered if Mrs. Davie knew what she was getting into.
"It's amazing," Paula says. "She's learned to sit quietly at the desk like the other kids. And the children have been so accepting of her."
Especially Emily Faber, who, several months ago, invited Kathryn to her 10th birthday party, the first birthday party--besides those of relatives--to which she had ever been invited. "Emily treats her like a friend," says Paula. "She is so loving toward her. Kathryn may seem happy all the time, but she has feelings. She knows when someone's not nice to her."
Emily Faber did not want to move to Texas, but she had no choice. Her father, Chris, who works for MCI, was getting a job transfer, so Emily and her older sister, Alison, were uprooted in the middle of last year from their home in a suburb of Detroit. They had lived there their whole lives and were leaving behind a large extended family and a host of friends.
A sweet-natured, outgoing child--"She was born with a party hat on," says her mother--Emily had a tough time when she moved to McKinney. There were only 10 children in her class, seven of whom were boys, and she felt lonely and homesick. After visiting Detroit last summer, she cried on the plane ride back to Dallas.
Perhaps the isolation she felt as a newcomer imbued in her a certain affinity for Kathryn. From the beginning of the school year, Emily's dinner-table conversation with her family consisted of what her mother calls "Kathryn stories."
She would tell her family about this funny little girl who would hug her at lunch while trying to steal her food. The highlight of Emily's week was when she got to be the buddy helper, she would say.