Jillian Heilman’s daughter, Halle Grace, was born early, racing into this world so quickly that she earned the nickname “Comet.” But within days, Heilman and her husband learned there would be more to Halle Grace’s birth story than arriving five weeks too soon. She had a rare chromosome deletion and doctors said that Halle Grace may never be able to eat, may never walk or talk, and could be cognitively delayed.
The Heilmans quickly realized that Halle Grace was a fighter who took great joy in proving the professionals wrong. Not only did she eat, but she enjoyed trying new restaurants and foods. Not only did she walk, but she completed her first 5K at the age of seven. Not only did she talk, but she had treasured conversations with friends and family. She was smart and an avid reader. From birth, she inspired her mother to become a fierce advocate for people with disabilities.
“I remember meeting with a genetic counselor. It was not a good example of how to work with a family of a newly diagnosed child with a disability, and I left in tears,” Heilman said. “I had 10 days with her in the hospital to really think about how that was communicated to us, and I realized there needs to be something better for families when you talk to people about a diagnosis, especially a child."
Halle Grace was diagnosed with primary immune deficiency at the age of two. She had sensory integration disorder, her hands were disabled and she had motor planning issues. Later, she was diagnosed with polyneuropathy – damage to multiple nerves outside of the brain and spinal cord. She had more than 40 surgeries and procedures and required monthly infusions and many daily medications.
Before she passed away at the age of 15, much of Halle Grace’s life was spent in a hospital, so she and her family interacted with hundreds of physicians, nurses and therapists. They learned from the medical professionals who knew how to communicate with patients and their caregivers but wondered why there weren’t more professionals trained to support families like them.
Heilman knew she wanted to continue her education, and her experience with Halle Grace’s care inspired her to pursue a doctorate in rehabilitation counseling that focused on working with people with disabilities, disability advocacy and disability rights. By the time she was one year into her program, all three of her children had been diagnosed with hereditary immune-deficiency-related disabilities, increasing her determination to help families like her own.
“I wanted to teach those who will be working with people like my family, who are going to be advocating for people with disabilities, to make sure that they learn to look at the individual before they look at the diagnosis,” she said.
Now, as a teaching postdoctoral scholar in the USF College of Behavioral and Community Sciences’ Department of Child and Family Studies, Heilman teaches graduate courses in the Rehabilitation and Mental Health Counseling program. She is a driving force behind the creation of the new Rehabilitation Counseling and Disability Sciences online master’s program, which prepares students for careers as rehabilitation counselors and professional disability specialists. She plans to share the stories of her children and invite other guest speakers with disabilities to speak with classes in the program to help end the stigma and stereotypes that those with disabilities face.
“I think I’m so excited about it because not only is it rehabilitation counseling, but it’s also more focused on disability sciences. So, we’re adding a component that’s not in our on-campus program, and we’re focusing more on advocating for disability rights and disability justice, and we’re also doing courses like trauma-informed care for people with disabilities,” Heilman said. “I’m excited that we can bring more of that disability focus and hopefully change some of the perceptions of people with disabilities, so we become a more nurturing and accepting society.”
Away from the classroom, Heilman also continues Halle Grace’s legacy. She founded and oversees the Halle Grace Foundation, a non-profit created in memory of her daughter, which works to advocate for and empower children with disabilities, support the families of children with disabilities, and provide medical professionals and pre-professionals education on the psychological aspects of pediatric disabilities and their impact on families. Heilman has shared her story with more than 2,500 pre-medical and medical professionals, reaching doctors, physician’s assistants, nurses, counselors and occupational and physical therapists.