Local mom promotes disabilities inclusion after family loss
by Stephanie Watson
Hudson resident and mom Dr. Jessica Hoefler turned the tragic loss of her daughter, Piper, into a mission to increase inclusion for all children with disabilities.
Pregnant with her second daughter in early 2020, Hoefler – an audiologist specialist – had a relatively normal pregnancy and delivery, despite the COVID-19 restrictions put in place in hospitals at the time. Yet at birth, it was evident that Piper was struggling to breathe. Doctors immediately whisked her to Akron Children’s neonatal intensive care unit for life support services.
A battery of tests revealed that Piper was born with a rare genetic condition called Spinal Muscular Atrophy Type 0. The condition, affecting one in about 10,000 babies in the U.S., was not reversible or treatable. Had she survived, Piper would have had severe disabilities affecting her daily life. At 27-days-old, however, Piper passed away in her mother’s arms, surrounded by family and her older sister, Quinn.
During the year following Piper’s passing, Hoefler struggled with more than just her grief. She found it challenging to explain to Quinn, then 4, what life would have been like for Piper had she lived and what it would have been like to be a sister to a person with a disability.
“Finding the right words to adequately describe a situation often considered taboo is hard for everyone involved, parents, siblings, caregivers, friends and the disabled children themselves,” Hoefler said. “How can I explain this to Quinn? And if we are struggling with this, others must be, too.”
As an educational audiologist with Summit Educational Service Center, Hoefler works with local youth with hearing disabilities and often other physical, mental or emotional disabilities as well. Books are one of the tools she uses to communicate with her patients and their families about the disabilities they have, what challenges they might face and how they are unique. She knew that books could also answer Quinn’s questions about her lost baby sister and help her understand what life might have been like.
Driven to honor Piper’s memory and serve the disability community, Hoefler launched Piper’s Key – a nonprofit that distributes books about disabled children to disabled children – on what would have been her daughter’s first birthday, April 23, 2021. The books at the center of Hoefler’s organization star young disabled characters and are written by the child themselves, their parents or industry professionals.
Hoefler explained that books create the perfect imagery that allows young children to understand their story from the perspective of others just like them. In the case of children with disabilities, those characters are often missing.
“Books available from Piper’s Key ensure that the most basic learning tool is a positive representation of children of all disabilities,” she said. “My goal is that every child has access to a book about someone like them, so they can see themselves and feel confident.”
The goal of inclusion at the heart of the organization’s mission also extends to the family members of book recipients.
“We find that family members often benefit more from books about the disability their child or sibling has because it gives them the language to describe it and normalizes their experience too,” Hoefler stated.
According to Hoefler, Piper’s Key works endlessly to match books with their recipients. Identifying age-appropriate books on specific conditions continues to be a challenge, she said, and “for so many children with disabilities, the primary focus is on their diagnosis and treatment/management plan.
“Oftentimes these plans may not include positive self-image through representation, especially for lower income families.”
Since its launch, however, Piper’s Key has donated nearly 6,000 books, featuring almost 70 individual disabilities, to children and pediatric practices across the U.S. and Canada. Locally, its books can be found in various Akron Children’s locations, as well as clinics, therapeutic specialists and school districts in the area. Piper’s Key also partners with Special Olympics and will be participating in events during Disability Book Week, which begins (coincidentally) on Piper’s second birthday on April 23.
As for the Hoefler family, it grew again when the family welcomed son Leo 10 months ago. Hoefler plans to continue grow Piper’s Key as well, by partnering with more local schools and eventually offering adolescent and adult disability-themed books.
“Piper would have grown up and needed these resources her whole life,” she said. “I’m a mom on a mission and this is my way of raising Piper. It’s just different, but it allows me to remember and honor her. I can say Piper’s name every day in a positive way without experiencing only grief.”
If you are interested in donating to Piper’s Key or requesting a book, please visit piperskey.com. ∞
Featured Photo: Jessica Hoefler hands out books to students with hearing loss at the Summit ESC TALK preschool. Photos submitted.