Sophia Burke was surrounded by special birthday gifts on her 18th birthday, a remarkable milestone in her life, yet none of them were for her.
The gift bags in the back of her mother’s vehicle, modified to accommodate Sophia’s wheelchair, were for 18 other recipients, most of them surprised by the gesture.
“You’re one of the few who knew we were coming,” said Sophia’s mother, Mimi Burke, in the driveway of my home Wednesday morning. “We’re hoping to surprise everyone today.”
Mimi Burke, of Crown Point, helps deliver birthday gifts Wednesday to 18 friends and neighbors of her daughter, Sophia, on her 18th birthday. (Jerry Davich / Post-Tribune)
As a birthday gift to India to herself, Sophia asked her parents if they could personally deliver gifts to India online and birthday cakes to 18 friends, in addition to the Crown Point police and fire departments who’ve assisted her many times in her life. All she asked in return is for them to sing her “Happy Birthday” and video record it.
“She’s been giggling to herself every time we talk about it,” her mom told me.
A flier in each send gift online to India bag states, “COVID-19 is scary. Rett Syndrome is too. But together, we can get through both!”
This note was placed in each gift bag, stating, “COVID-19 is scary. Rett Syndrome is too. But together, we can get through both!” (Jerry Davich / Post-Tribune)
Sophia was diagnosed as a toddler with Rett syndrome, “an awful neurological disorder that messes up everything I try to do – and it mainly affects GIRLS,” states a business card-like handout she offers to strangers. “I cannot talk, use my hands or move around very well, but I can hear you. I understand. I am smart.”
Sophia can still communicate, usually by saying “yes” through looking into her mother’s eyes, and “no” by looking away. Sometimes she does so through an eye-gaze communication device called Tobii. She controls it with her eyes, picking out different words and phrases to share her thoughts.
Her new Tobii allows her to select her own audio voice. She chose a British accent. This is how she indicated to her family that she wanted a yellow and pink birthday cake. And how she insisted on a gift-wrapped roll of toilet paper in everyone’s gift bag.
“Sophia has a silly, sometimes evil, sense of humor,” Burke said. “She’s been giggling to herself every time we talk about it.”
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