April 3, 2024
Sundae Shares “Wheel Life” Insights in New Book
A teenager supported by Person Centered Services gives her perspective on life with muscular dystrophy and finds ways to make a difference in her community.
By sharing her vibrant voice and her spirit of advocacy, Sundae Duyssen is making a major impact on the LeRoy, NY area.
A high school senior, Sundae lives with a rare form of muscular dystrophy that causes increased issues as she grows older. She faces many restrictions to her motor abilities and uses a wheelchair to get around. This, however, has not prevented her from pursuing an ambitious life.
“I like to prove people wrong,” said Sundae, who is always eager to engage in new projects.
This year, Sundae has taken on one of her most ambitious projects yet: publishing her first book.
Willow’s Wheel Life is a work of fiction based in part on Sundae’s real experiences. The illustrated children’s book follows Willow, a young woman with muscular dystrophy, as she creates an all-inclusive club at her school. Her club then works to secure a wheelchair-accessible swing set and a sensory-friendly room for students.
The book is inspired by Sundae’s own work as an award-winning fundraiser who supports great causes in her community. Sundae has a heartfelt passion for uplifting others and improving the world around her. A recent toy drive she spearheaded for Golisano’s Children’s Hospital was featured on Channel 10 News in Rochester and in the Livingston County News. She even received a personal letter from Governor Kathy Hochul recognizing her community service.
Sundae has organized, promoted, and hosted events to raise funds for the LeRoy Food Pantry, the LeRoy Village Green, the Genesee County Animal Shelter, and the Salvation Army. Some of these popular fundraisers were bake sales that featured hundreds of homemade treats.
In addition to her fundraising work, Sundae is an activist for the greater inclusion of people with disabilities. On social media, she speaks openly about her struggles, challenges, and goals. Through her online platform, Sundae has connected with people from all over the globe, providing her distinct perspective.
Sundae hopes places will become more accessible for wheelchair users by installing elevators, ramps, and automatic doors. She would also like to see people reapproach how they interact with those who have disabilities.
“When you see me, talk to me,” Sundae said. “Don’t just talk to my parents. Make me feel involved.”
Cheryl Crossett is a Care Coordinator based in Batavia, NY employed by Person Centered Services. She has partnered with Sundae for more than eight years, linking her to vital resources and opportunities. Importantly, Cheryl helped the Duyssen family secure a van that can accommodate Sundae’s wheelchair. Recently, she also registered Sundae for self-directed services that give her greater control over staffing support.
“I love her determination,” said Cheryl. “Sundae doesn’t give up. She always comes up with so many ways to help others. Even though life is hard, she doesn’t quit. I love that she dreams and strives to make those dreams come true.”
Sundae is currently dreaming up the layout and décor for a new bedroom she has planned. She also hopes to write another book, and to continue fundraising, advocating, and growing her social media presence.
Whenever she can, Sundae appreciates getting outside to walk her dog, Bailey the Goldendoodle. She also enjoys shopping, travelling, trying new foods, visiting coffee shops, and taking part in photoshoots.
“Don’t take your abilities for granted,” Sundae said, offering a critical reminder. “The disability community is the only minority group you can join at any time of your life.”
You can purchase Willow’s Wheel Life, as well as graphic designs for greeting cards and invitations, through Sundae Rose Creations.
Follow Sundae on Instagram and TikTok at @sundaes.wheel.life.
