The first time most children hear about Parkinson’s is when a relative is diagnosed with it. When that happens, children have questions and, likely, fears. This can be a challenge for them, and for parents and family to address.
Graphic Communications university student, Sasha Au Yong decided to take on the typical questions and fears of kids around Parkinson’s as she was once that child with those same question.
A Children’s Book – There’s Something Different About Grandpa
Sasha’s paid forward her lived experience by writing a children’s book about Parkinson’s to assist other families in talking about it with their children and grandchildren.
The book, Something’s Different About Grandpa, is suitable for all ages and is an excellent way for adults to teach younger children about Parkinson’s. Sasha used the $1,000 grant she received for winning the Global Leadership Program Capstone Action Project to publish her first run of the book. All proceeds from book sales she graciously donated to Parkinson Canada.
“I became aware of how Parkinson’s is often overlooked in society, so I decided to pursue a project that brought education and awareness”, says Sasha, “More resources and attention will directly impact medical advancements.”
Sasha’s grandfather lived with Parkinson’s for 25 years. At eight years old, she became aware of her grandfather’s symptoms. In her adolescent years, she watched in awe of her father’s dedication to caring for her grandfather as his Parkinson’s progressed. She recalls feeling sad and scared – complex feelings for children of any age.
Sasha says her own family did a wonderful job of answering her questions and listening to her fears. They also helped her learn how she could help with her grandfather, too.
“We would just spend time reading together, or me reading to him. And we would go to the park and feed squirrels and birds,” says Sasha.
In those memories, Sasha recalls learning an invaluable lesson at an early age: time together is not to be taken for granted.
When Purpose and Creativity Collide
Sasha spent two years researching the symptoms and effects of Parkinson’s, drafting a fiction book drawing from her family’s story, and ultimately crafting a message of empathy and understanding.
A core message in the book? Even though Parkinson’s can be an advanced topic for children, there are ways to involve them, just as Sasha felt helpful when reading to her grandfather.
“I had my character start out not understanding what was going on”, says Sasha. “And he learns that sometimes the little things you can do to help the person living with Parkinson’s, or the family, can make a big difference.”
More than the Money
Sasha could have simply created the book for the Capstone Action Competition and donated the $1000 winnings, and that still would have been an incredibly generous gift. Instead, she applied a sense of ingenuity and purpose to turn that $1000 into an impressive $1,500!
While monetary donations enable us to provide supports and resources for the Parkinson’s community, its about so much more than money. Sasha’s efforts not only increased her donation, it generated awareness of Parkinson’s disease among audiences outside the Parkinson’s community – a sometimes difficult, but always necessary, goal of organizations supporting people with Parkinson’s.
Sasha represents the power behind getting youth involved early and supporting them as they lean into a sense of purpose.
Sasha’s father, Alex, handles the administration for sales of the book and has been overjoyed by the support that it has received.
“She has received tremendous support from families, faculty and staff at her school,” says Alex “In addition, media coverage has meant we’ve sold the book to families across Canada, and it’s not even available through any major retailers yet.”
Sasha is looking for opportunities to have a second print run so Something’s Different About Grandpa can get an even wider distribution. She and her advisors are brainstorming the next chapter – pun intended – of the book’s availability.
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