Upper Arlington, Ohio
For nearly four decades, Karen and Jeff Groff have read the same children’s books to their son, Danny. Now 39, Danny still lights up when his mother whispers the line “George got curious” from Curious George Rides a Bike. Sitting between his parents with his stuffed Bert Muppet toy, the tradition has become one of many daily rituals that bring him comfort.
Danny lives with Lennox-Gastaut syndrome (LGS), a rare and severe form of epilepsy that affects about 50,000 people in the U.S. and 1 million worldwide. According to the LGS Foundation, each seizure causes brain damage, leading to developmental delays and lifelong disabilities. Danny has seizures every day, leaving him with the abilities of a 2-year-old. He also has Type 1 diabetes, further complicating his care.
His daily routine is predictable: morning coffee, medication and insulin injections, story time, outings, evenings with “Wheel of Fortune,” and Friday “happy hours” with extended family. He dotes on his infant niece and cherishes his Ohio State–themed bedroom.
But as his parents age, the Groffs face an agonizing question: What happens to Danny when they are no longer here?
“Our worst nightmare is that we lose him first,” Karen said. “And our worst nightmare is that we go first.”
Planning for an Uncertain Future
Karen and Jeff, both 66 and retired educators, are confronting the realities many families of adults with rare diseases face. They are prearranging three funerals — their own and Danny’s. The task, Karen admits, is “a little overwhelming.”
Research shows they are not alone. A University of Illinois study found fewer than half of parents of children and adults with disabilities have made long-term care plans. Financial constraints, emotional strain, and limited resources keep many families from preparing. A 2020 report estimated households with an adult with disabilities need nearly $18,000 extra each year.
“It’s normal to have these concerns,” said Jill Polander of the National Organization for Rare Disorders. “It’s OK to ask for help.”
The Burden and the Blessing
For the Groffs, one source of reassurance is their daughter, Jessica Hartman, 36, a preschool special education teacher. She and her husband have already committed to taking care of Danny.
“We hate to put that burden on them,” Karen said.
But Jessica insists she doesn’t see her brother as a burden. “Everything Danny taught me I now use in my career,” she said.
Still, caring for Danny is demanding. The Groffs rarely sleep through the night and handle everything from seizure response to basic care. They had the help of an in-home nurse for 25 years, but she recently retired. Finding specialized care is difficult amid a nationwide nursing shortage.
Financial Struggles and Legal Constraints
Danny receives just over $600 a month through Supplemental Security Income. But strict rules limit his assets to under $2,000 in order to maintain benefits. For now, Jessica is set to inherit her parents’ estate with the understanding that it will fund Danny’s care.
“We’re trying to be extremely frugal in retirement so that that is untouched,” Karen said.
Building Support and Resources
Karen has also turned her family’s challenges into advocacy. As board president of the Lennox-Gastaut Syndrome Foundation, she helped develop a “C.A.R.E. Binder,” a resource that guides families through organizing medical, legal, and financial information, as well as difficult conversations about the future.
“Parents have so much shame and fear around this topic,” said Rosellen Reif, a mental health counselor who works with families of children with disabilities. “It’s such a taboo, even in the disability world.”
Online communities have been lifelines for the Groffs, who connect with other caregivers through Facebook groups and national organizations.
“You need that sense that you are not alone,” Karen said.
Looking Ahead
For now, the Groffs continue their search for a new in-home nurse while cherishing the life they’ve built with Danny. What matters most, they say, is keeping him safe, happy, and surrounded by family.
“It’s all about quality of life at this point,” Karen said. “And he’s happiest when he’s with the people he loves — being Uncle Danny.”
