January 7, 2011

Seeking a very special doll

The Roy sisters of Salem — Kiana, 8, Kalli, 4, and Kaila, 10— sift through their classmates’
 letters at their kitchen table on Wednesday afternoon. 
Union Leader Correspondent
SALEM -- FOR SALEM SISTERS Kaila, Kiana and Kalli Roy, love has no color.
Kalli, 4, shares a moment with her mom, Patricia. 
Both students at Lancaster Elementary School, Kaila, 10 and Kiana, 8, are hoping to raise awareness of a condition that has all too often caused people to stop and stare at their younger sister. Kalli, 4, was born with albinism, a genetic condition in which individuals lack pigment in their eyes, skin or hair. The National Organization for Albinism and Hypopigmentation (NOAH) estimates around one in 17,000 Americans are born with the condition, which causes vision impairment and, in many cases, extreme sensitivity to sunlight. A bright, precocious youngster with pale hair and animated violet eyes, Kalli enjoys watching cartoons, dancing and chattering with strangers. She attends a program for children with special needs on account of her vision impairments, where, as she puts it, she’s learning to read “bumpy books,” or Braille, and heighten her other senses through activities such as sound-activated hide-and-seek. 
“I’m just a sunglass kid,” Kalli likes to tell people who ask her why she wears sunglasses so often. Still, when strangers meet Kalli for the first time, they’re often left without words, much to her sisters’ chagrin. 
“People with albinism are really nice kids. Really, they’re just like anyone else,” Kiana said as she sat at the family dinner table Wednesday night. Hoping to raise awareness of a condition they feel is too often misrepresented, Kiana and Kaila were inspired one day while they and their sister played with their beloved American Girl dolls. 
“We’d like the American Girl doll company to make a doll that looks more like Kalli,” Kaila said, noting a true “Kalli Frances” doll might use a walking stick, hold a Braille storybook and wear a colorful long-sleeved bathing suit and matching cap like their sister wears when she goes swimming. 
With the blessing of their mother, Patricia Roy, the girls contacted the doll manufacturer, which, in turn, suggested they put their request in writing. After approaching their school principal, Adam Pagliarulo, and guidance councilor, Kim Krasowski, Kiana and Kaila decided to encourage others to write letters on Kalli’s behalf, starting with their classmates at Lancaster School. 
“We ended up with 38 letters from the Lancaster kids alone,” Patricia Roy said. And as word of the sisters’ mission began to spread, more letters arrived. 
Wednesday night, the sisters pored over the pile of letters spread out on their kitchen table. 
“Hello Doll Company,” one letter from a six-year-old classmate read. “Kalli needs a doll.” 
“Kalli has to wear special glasses to protect her from the sun, but she sees everything,” wrote a Lancaster fourth-grader. “(A doll) would make her so happy she might do a dance and jump!” 
With their fellow classmates now aware of their sister’s condition, Kaila and Kiana haven’t stopped there. 
“We’ve notified Governor Lynch, the New York Times and President Obama,” Kaila said with a grin. 
“I told them to go ahead, go to everyone and give it everything you’ve got,” Patricia Roy said of her girls. “For years they have seen albinism shown in the movies as evil or weird. That’s always bothered them and they asked why isn’t albinism ever shown as a positive thing?” 
In the Roy household, questions about Kalli’s albinism are welcomed, not shied away from. 
“Kaila and Kiana are great about asking people who stare if they have any questions,” their mother said. “And Kalli will just tell them that it’s okay to stare, ‘I’m fabulous,’ she’ll tell them. And she is.” 
“I think that when people see that people who have albinism aren’t weirdos, they aren’t ugly ... then people can stop and ask questions,” Kaila said. “Maybe they’re too scared to ask, maybe they think it’s too personal. But it really just makes things easier.” 
Those wishing to help Kalli get her wish, an American Girl doll in her likeness, are asked to write letters and send them via e-mail to vote4kalli@gmail.com. 

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