Ohio Parents Fear Dying Before Their Child
A Life of Love, Care, and Uncertainty
Karen and Jeff Groff have spent nearly four decades reading the same children’s books to their son, Danny. At 39 years old, Danny stands 6 feet, 1 inch tall, but his developmental abilities are equivalent to those of a 2-year-old. He lives in Upper Arlington, Ohio, where he enjoys sitting between his parents on the couch, holding a stuffed Bert Muppet toy. When his mother reads “Curious George Rides a Bike,” he leans in and smiles when she whispers, “George got curious.”
Danny was diagnosed with Lennox-Gastaut syndrome, a rare and severe form of epilepsy that typically begins in early childhood. The condition causes frequent seizures, which can lead to brain damage, learning difficulties, and lifelong disabilities. According to the LGS Foundation, about 50,000 people in the U.S. and 1 million worldwide live with this condition. Danny experiences daily seizures, and Karen Groff said that managing his health is a constant challenge.
In addition to his epilepsy, Danny also has Type 1 diabetes, which limits his ability to participate in full-time adult day programs. His caregivers cannot manage his insulin needs, so he spends mornings at the program and the rest of his time at home with his parents.
Daily Routines and Emotional Struggles
Danny’s routine includes morning coffee, daily injections, medications, storytime, afternoon outings, and evenings watching “Wheel of Fortune.” He adores his 10-month-old niece, Cecelia, and his Buckeye-themed bedroom, filled with Ohio State University memorabilia. Despite his love for these simple pleasures, the Groffs know that their son’s future is uncertain.
As retired educators, Karen and Jeff face a daunting reality: they must plan for two possible outcomes—either they pass away before Danny or he passes away before them. “Our worst nightmare is that we lose him first,” Karen said. “And our worst nightmare is that we go first.”
When parents or caregivers are no longer able to provide care, the responsibility often falls to another family member or friend. Even if someone moves into a facility, someone still needs to oversee their care and finances. In the U.S., caregiving is becoming increasingly common, with a new study from AARP showing that nearly one in four adults is a caregiver.
The Groffs are currently planning three funerals: their own and Danny’s. “It’s a little overwhelming,” Karen admitted. “I can’t die.”
Navigating the Challenges of Rare Diseases
Parents of adult children with rare diseases often struggle with the ongoing care their children need. Limited research into these conditions leaves many families unsure how to plan for the future. According to the National Organization for Rare Disorders, its help line received nearly 135,000 requests for assistance in 2024, with at least 125 calls annually from parents seeking guidance on long-term care.
Some families opt for residential facilities, while others rely on a mix of family, friends, and paid caregivers for 24/7 in-home care. Both options can be costly. A 2020 report estimated that a household with an adult with a disability requires an additional $17,690 per year.
The Groffs are still figuring out their next steps. A 2018 University of Illinois study found that fewer than half of parents of children with disabilities made long-term plans for their child’s care. Many cited financial constraints, lack of resources, or emotional stress as barriers to planning.
“It’s normal to have these concerns,” said Jill Polander, vice president of patient services at the National Organization for Rare Disorders. “It’s OK to ask for help.”
The Role of Family and Community
For the Groffs, the most difficult part is the burden they feel they will place on their daughter, Jessica Hartman. As a special education preschool teacher, Hartman understands what her brother needs. She and her husband have been ready to take care of Danny since they married.
“We hate to put that burden on them,” Karen said. But Hartman doesn’t see her brother as a burden. “Everything Danny taught me I now use in my career,” she said.
However, the Groffs would prefer to avoid placing the daily responsibilities of caring for Danny on Hartman. They hope to secure a nursing staff to care for him in their home if they pass away before him. Hartman and other family members would still need to manage the caregivers and his finances.
Danny receives about $600 per month through Supplemental Security Income, but it’s not enough for him to live on. To maintain government benefits, people with disabilities must keep their assets under $2,000. For now, Hartman is set up to inherit everything her parents own, with the understanding that the money is for her brother’s care.
“We’re trying to be extremely frugal in retirement so that is untouched,” Karen said.
Building a Roadmap for Families
Caregivers often face an emotional toll, and many hesitate to discuss their challenges with family or friends. Rosellen Reif, a mental health counselor in North Carolina, works with families of people with disabilities and emphasizes the importance of open conversations.
“Parents have so much shame and fear around this topic. It's such a taboo, even in the disability world,” Reif said. She encourages families to make transitions early and involve loved ones in the process.
Reif also helps patients write letters to friends and family, ensuring that everyone is aligned on long-term care decisions. “We don’t want them to lose their parents and in the same week have to move into somewhere new,” she said.
For Karen Groff, community has been essential. After her son’s diagnosis, she found a Facebook group that offered support. “You can go on there any time of the day or night, ask a question, and someone will be up at night and get back to you,” she said. “And you need that sense that you are not alone.”
The Groffs are still looking for a new in-home nurse, but the nursing shortage has made it difficult. They expect the search to take at least six months.
A Focus on Quality of Life
Despite the challenges, the Groffs remain focused on making sure Danny is safe and happy. He is happiest when he’s surrounded by the people he loves, playing “Uncle Danny” to Hartman’s baby and laughing with his aunts and uncles at family gatherings.
“It’s all about quality of life at this point,” Karen said.
This story is part of USA TODAY’s The Cost of Care series, highlighting caregivers across the country.