Lexi is an 18-year-old from Charlotte NC, who is a writer avid reader. She loves world history, mythology, anything Star Wars or Marvel universe and enjoys swimming and adaptive horseback riding.
Lexi has kernicterus; brain damage from mismanaged newborn jaundice. Kernicterus can cause movement disorders and hearing loss but does not affect cognitive function. Lexi’s movement disorder is severe and she can’t walk unassisted even for a single step, so for her, her wheelchair acts as an extension of or even a substitute for her legs.
“She loves getting out in the community and her wheelchair is her ticket to that. Whether tooling around the mall or taking a walk with her family on paved nature trails, Lexi knows her wheelchair means she can join her family and friends,” said Lexi’s mom Susan. “In a non-pandemic world, we travel a lot, including on planes.”
Lexi has been a Numotion customer for more than a decade and has developed a personal relationship with her Assistive Technology Professional (ATP), Todd Dewey. “Todd is more than our ATP, he is a friend. He understands how crucial it is to have a well-functioning chair and will help us navigate issues quickly and efficiently. Todd is also passionately involved in the disability community. Even his personal time revolves around making lives for persons with a disability easier and more accessible.”
Despite the ongoing pandemic, Susan and Lexi said they have been impressed with how quickly Numotion has adapted. One thing in particular that has made all the difference is the myNumotion app. “The myNumotion app helps get us in the queue for service quickly and efficiently. When a technician comes to our house they never need reminders about masking and social distancing. Crisis leads to innovation and I think the model Numotion has put together will continue to benefit our community as we move out of the pandemic,” said Susan.
Susan and Lexi have a book coming out this spring, The Year of the Buttered Cat
that goes into great detail about Lexi’s very rare condition and the struggles that come with that. “Lexi started writing down experiences in her life that we thought were touching or funny as a homeschool writing project years ago. Her dad loved these stories and encouraged us to put them together into a book. We compressed the timelines and added some bits to make the story engaging for young readers, but it remains a mostly true story about what happened to Lexi to leave her with an unmanageable body and without a voice. While we hope to raise awareness about untreated newborn jaundice, we also really want young readers to learn to engage more with persons with disabilities—even severe ones.”
With the independence that comes from her wheelchair and the encouragement of those around her, Lexi and her mom use their writing skills as a way to encourage others to understand better the wholeness of people with disabilities. “Look deeper. Look beyond the chair and don’t let that become a barrier to friendships because persons with disabilities can bring so much to the table if you give them a chance,” said Susan.
Their book will be released in April but is on presale now at https://www.pennycandybooks.com/shop/buttered-cat