‘Just be open to everything:’ Corona del Mar High senior writes a book to children for her sister
Be kind. Be patient. Be inclusive and take nothing for granted.
Grace Murray said her older sister, Ava, taught her that.
Grace, 17, said she started volunteering with organizations like Best Buddies, Special Camp and Special Olympics Southern California when she started high school in Newport Beach because of Ava, who had Angelman syndrome, a rare genetic disorder that has shared characteristics with autism and cerebral palsy. Ava died at age 12 in 2012, but Grace said Ava’s impact on her life has grown every day as she’s gotten older.
She said she wants to continue her work into college and that her goal is to find a career in which she can help house or provide services to those with special needs.
So, when the pandemic closed Corona del Mar High School in the middle of her junior year and put a hold on her volunteering activities, all of Grace’s plans for the rest of the year and her summer — Special Camp was canceled, she explained — ground to a halt.
After an Oct. 12 reopening was postponed, officials created a plan to let kids learn from home but stay with their home schools. They also created a COVID-19 dashboard to identify new cases.
“I was thinking of what I could possibly to do that I could do from home that could be beneficial for people without it being dangerous,” Grace said. “So, I started to write the book.”
This summer, Grace self-published a book called “The Same But a Little Different,” a children’s book about a girl with Angelman syndrome and her sister on a trip to a water park. The intention, she said, was to instill in children from a young age to include all people, but especially those with special needs.
The book is about 26 pages with three to six sentences on each page, each one completed with illustrations from Antonio Pahetti.
“With my sister, I would see people staring at her or laughing at her because she’d wear diapers and be in a stroller at an older age,” Grace said, adding that the story was based off of a personal experience she and Ava had. “At the end of the story, there’s tips on how to be kind and inclusive and why it’s important to be sympathetic and nice to everyone.”
So far, Grace estimates about 165 copies have been sold.
One of those copies was sold to Penny Schwent, whose own daughter, Emily, has Angelman syndrome. Schwent, who lives in Schaumburg, Ill., said she heard about the book through a Facebook group for Angelman syndrome and bought a copy for her granddaughter, Maddie, who is 2.
All the proceeds for the book are donated to the Angelman Syndrome Foundation.
“I wanted [Maddie] to start out early and to not be afraid,” Schwent said. “She knows her aunt is different. She loves her, but is a little bit wary sometimes because of the behaviors my daughter has. I brought the book down to them.”
They changed the girl’s name to Emily, Schwent said, so now Maddie calls the book “Aunt Emmy’s book.”
“Last time she was there, she brought it to every single one of us to read Aunt Emmy’s book to her. To her, it’s a really nice book about her aunt and the girl on the front looks very similar to my daughter with the long, brown hair and the wheelchair,” Schwent said. “That could be a picture of my daughter.”
Schwent said she felt that the book helped her granddaughter see it was normal to have an aunt with special needs.
“I think it’s so important to start out very young. You don’t want to instill a fear or a worry about people being different and you start out, even as toddlers, letting them know that’s normal,” Schwent said. “She makes noises. She laughs a lot. She has trouble walking."
“They see that as a normal part of any person and they’re so much more accepting as they grow up and as they grow and get out in the world more, they won’t be afraid,” she added. “They won’t treat them poorly because of being different.”
Grace’s mother, Alissa Murray, said she was proud when Grace told her that she’d write a book about her and her sister. She said Schwent reached out to her on Facebook after buying the book.
“It’s so important to be kind and it really does make someone’s day.”
“I was like, ‘Aw, that’s why Grace wanted to write this book.’ It’s not just Angelman syndrome. It’s for anyone differently abled,” Murray said. “It reaches out to so many.”
Grace said she was a little shocked by the number of people who bought the book but said she doesn’t know if she’ll write another. She’s busy thinking about the next thing she could do to possibly help the special needs community.
But, she said, she hopes the message of being kind to everyone, not only those with special needs, is one she can spread widely.
“Everyone has bad days. Everyone has stuff at home that they don’t want to share, and being kind is so easy to do and it’s a lot of effort to go out of your way to be rude,” Grace said. “It’s so important to be kind and it really does make someone’s day.”
“Just be open to everything,” she said.
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