Some people spend years trying to find their mission in life. For sweet Piper Grace Hoefler, it took just 27 days. Piper passed away from the effects of Spinal Muscular Atrophy (SMA) Type 0, but her legacy lives on in books about inclusion donated by her family’s charitable organization, Piper’s Key.
“I didn’t want to focus on grief after losing Piper. I also wanted her big sister to be excited to talk about Piper and not feel sad or afraid to talk about her,” said Jessica Hoefler, Piper’s mom and founder of Piper’s Key. “It was important to me to be connected to the community Piper was a part of and find ways to bring understanding to my daughter, Quinn…Through that process, I noticed how many books weren’t available that showed or talked about inclusion and acceptance of differences.”
Piper spent 27 days in the NICU at Akron Children’s where she brought love and purpose to her family.
Jessica saw this gap in literature as an opportunity to help her feel close to Piper while allowing Piper’s life to bring good to others. The Hoefler family started researching and finding books that talked about kids with differences and shared them at Quinn’s school and her pediatrician’s office at Akron Children’s.
“Had Piper survived her rare disease, she would be living with multiple disabilities and would need opportunities to grow a positive self-concept,” said Jessica. “Seeing yourself in books help kids embrace differences and also lets siblings and parents know that it’s okay to use the term disability and talk about it in a positive way.”
Fueled by love and loss, Piper’s family established a charitable organization, Piper’s Key, that gives inclusive books to children with disabilities that represent their unique selves in a positive light. The books given are written by individuals with disabilities, family members or parents of children with disabilities or professionals working with children with disabilities.
Piper’s mom, Jessica, attends events where she can raise awareness for Piper’s Key and talk about her daughter’s legacy in a positive, uplifting way.
“Dr. Galm was the first to connect me with the developmental clinics at Akron Children’s so books could be gifted directly to patients. I then contacted other specialties like Palliative Care and the NeuroDevelopmental Science Center where Piper would have been a patient,” said Jessica. “The messages in the books were resonating with people and soon I was getting requests for books from dozens of families, schools and organizations.”
Piper’s Key now provides books to children – at no cost – throughout the US and Canada. Big sister, Quinn, also helps her mom select, prepare and drop-off books to local places so she can see first-hand the positive difference Piper is making.
Big sister, Quinn, is always excited and ready to help package up books to celebrate her sister and the message of inclusion that she brings to others.
“I feel like Piper’s Key is my way of parenting Piper. It allows people to say her name without saying ‘I’m sorry’ and there’s comfort in that,” said Jessica. “I’m hopeful that through our nonprofit, her siblings (little brother coming soon) continue to be excited talking about Piper… My goal is to grow beyond youth books and also include adult books because it will allow me to follow the stages of Piper’s life.”
Jessica notes that there is no wrong way to celebrate the life of or grieve the loss of a child. As an Akron Children’s patient, Piper and her family found support through the hospital’s Palliative Care and NICU staff who helped them care for and cope with her loss.
