Jessica Baxter, 5, center, shows Kyra Conrad, on the screen at right, the puzzle pieces as she puts them together during class Wednesday afternoon.
THE BLADE/KATIE RAUSCH
MARBLEHEAD, Ohio — Kyra Conrad is your typical preschooler.
The tiny 4-year-old with big chocolate-colored eyes loves Minnie Mouse and practicing her numbers and letters out loud. She likes reading books with classmate Sadie Stephenson and pretending to make soup in a make-believe kitchen with Jenna Boykin and Makenzie Collins.
But, while Sadie, Ella, and Makenzie interact physically in their preschool classroom at Danbury Elementary School in Marblehead, Kyra does it with them from home.
It’s modern technology — FaceTime, specifically — that has transported Kyra to the classroom to interact with children for the first time this year since birth, when she was diagnosed with two disorders that keep her housebound.
It’s the love and commitment of family, friends, and school staff that keep her there.
“You come across this child who has never been with another child her age, ever. And these children, they get to all be four [years old] together,” said Lori Brown, Kyra’s preschool teacher. “We see the world through her eyes, and I’m the lucky lady who gets to push play. She teaches me something every day.”
Kyra has both severe combined immunodeficiency disorder, a condition in which her body’s ability to fight infectious disease is compromised, and multiple intestinal atresia, a malformation in which there is an absence of a portion of her intestine at birth.
One in every 200,000 children is born with immunodeficiency, sometimes referred to as the “bubble boy disease,” after the popular 1976 movie about a boy with SCID who spends life surrounded by a bubble, according to Boston Children’s Hospital. Thousands of other children annually are diagnosed with intestinal atresia. To have both, doctors told Kyra’s parents, is extremely rare.
“If you didn’t know any of this about her, you wouldn’t know it by talking to her,” said her father, Kory Conrad, a science teacher at Danbury High School. “She’s dealing with some serious issues and she’s tackling them head on.”
Kyra rarely goes out of the house, usually once every two weeks for treatments at the Cleveland Clinic to give her immune system a boost, or for an occasional stroller ride. When she does, she wears a mask.
Everything she drinks is boiled first, and she is fed nutrients through a line to her heart to which she is hooked 21 hours a day.
Parents Wendy and Kory; sister, Mikahla, 14, and brother, Kaden, 10, must shower upon entering their Marblehead residence.
Kyra’s classmates made her personalized paper valentines last month — carefully washing and sanitizing their little hands, as well as the table, scissors, and crayons they worked with before sealing them in a ziploc bag. Mrs. Brown labeled it “germ-free valentines.”
For Kyra, it is all a way of life.
Every school day for about two hours, Kyra greets her classmates, sings with them, does spelling and counting exercises, and of course, plays. Through FaceTime on a big screen monitor and on an iPad, Mrs. Brown, educational aide Pam Dray and the other children are able to “move” Kyra around the classroom to different work and play stations.
On this particular day during group time, she rests her chin on her hands and leans in toward her classmates, smiling, her hair sprouting from the sides of her head in pigtails. Her classmates squirm in their seats, wave, and holler, “Hi Kyra!” — showing enthusiasm as only a preschooler can.
“What should we do first today, Kyra?” Mrs. Brown inquires.
“The pledge,” she says grinning and standing up, placing her hand over her heart to recite the Pledge of Allegiance.
The pledge is followed by song, dance, and reading exercises; Kyra keeps up with it all.
Her father responds to a question about her prognosis with, “It’s step by step, day by day.” When she was born, he said, doctors gave her a 1 percent chance of survival.
The couple had a son, Francis Ryan Conrad, who died shortly after birth when he was given a needed blood transfusion and the white blood cells attacked his immune system.
After having two more healthy children, the couple were unaware they carried a genetic gene until Kyra, Mr. Conrad said.
School administrators, staff, and students have embraced the idea of bringing Kyra to school electronically, setting up technology in the gym and other classrooms so that she can participate as much as possible.
Last month, she attended a pep rally; this week, a school musical. Danbury High School Student Council students inquired Wednesday about her attendance at a preschool Easter egg party they were planning. Could they provide eggs and other goodies to her parents for her to find in her home, a student asked Mrs. Brown.
Through their parents, classmates are setting up electronic playdates on the weekends.
She will virtually attend her preschool graduation this spring.
Geoff Halsey, the school’s director of technology, said he and other school staff were to attend a demo today of VGo, a robot that would allow Kyra to go remotely from class to class for music, physical education, and other courses in separate rooms as she gets older.
It’s just one option they are looking at to knock down not only the preschool walls for Kyra, he said, but walls all over the school.
“It’s a classroom without walls, and her quality of life has definitely improved,” Mr. Conrad said. “Now she talks about the kids in class all the time. She has friends now.”
Contact Roberta Gedert at: firstname.lastname@example.org or 419-724-6081.