Jeff (left) and Karen Groff, of Upper Arlington, Ohio, are caregivers for their adult son Danny (center), who has Lennox-Gastaut syndrome.
Jeff Groff puts shoes on his son Danny as they prepare for an outing from their Upper Arlington, Ohio home. Behind them is Jeff's wife and Danny's mother, Karen.
Family portraits rest behind Jeff Groff as he reads to his son, Danny. From left in the pictures is Karen and Jeff when they were both young teachers. Danny and his sister Jessica are represented in the smaller portraits.
Karen (on couch from left), Jeff and Danny Groff watch as Jessica Hartman plays with her nine-month-old daughter Cecelia during a family "happy hour" held at a relatives home in Upper Arlington, Ohio.
At her home on July 17, 2025, Karen Groff holds a childhood photo of her son Danny, who is now 39 years old.
Karen Groff nuzzles her son Danny during a family "happy hour" held at a relatives home in Upper Arlington, Ohio. Watching the moment is Karen's husband and Danny's father, Jeff Groff.
Jeff Groff looks at an iPad with his son Danny in their Upper Arlington, Ohio, home on July 17, 2025. Jeff and his wife Karen are caregivers for their son Danny, who has Lennox-Gastaut syndrome.

Karen and Jeff Groff have read the same children’s books to their son Danny for nearly four decades.

At 6 feet, 1 inch tall, 39-year-old Danny Groff enjoys sitting in between his parents on their couch in Upper Arlington, Ohio holding a stuffed Bert Muppet toy. He leans in toward his mother as she reads "Curious George Rides a Bike," and breaks into a smile when she whispers, "George got curious."

Danny Groff has Lennox-Gastaut syndrome, a rare and severe type of epilepsy that typically develops in early childhood. About 50,000 people in the U.S. and 1 million people worldwide have the condition, according to the LGS Foundation. Every time a seizure happens, brain damage occurs that can lead to learning difficulties and other lifelong disabilities. Danny Groff has seizures daily, and Karen Groff said he has the developmental abilities of a 2-year-old.

He also has Type 1 diabetes, which means he can only stay part time at his adult day program. The staff there can't distribute the insulin he needs to live. He spends mornings at the program with his peers, and the rest of his time at home with his parents.

Danny Groff has grown accustomed to his routine: morning coffee, daily injections and medications, story time, afternoon outings, "Wheel of Fortune" in the evenings and Friday “happy hours” with his extended family. He adores his 10-month-old niece, Cecelia, and his Buckeye-themed bedroom, where the Ohio State University logo adorns everything from his bedding to his lamp to his wall art.

The Groffs know it can’t always be this way, but their son can't talk about his future. Now, both 66 and retired educators, they are planning for two outcomes, which Karen Groff said are equally scary.

“Our worst nightmare is that we lose him first,” she said. “And our worst nightmare is that we go first.”

When parents and caregivers die or otherwise can no longer provide care to their loved one − whether they be a person with a disability or someone else who needs care − that responsibility inevitably gets passed down to another friend or family member. Even if the person being cared for moves to a facility with caregiving staff, someone still needs to help with that move and keep tabs on the person's care and finances. Caregiving is becoming increasingly common in the U.S., where a new study from AARP found nearly 1 in 4 adults are caregivers.

The Groffs are in the midst of prearranging three funerals: their own and Danny's.

“It’s a little overwhelming," Karen Groff said. "I can’t die.”

'It's OK to ask for help'

Parents of adult children with rare diseases often struggle with the ongoing care their kids need. Research into rare conditions is often limited, leaving many parents like the Groffs uncertain on how to plan for the future.

The National Organization for Rare Disorders' help line in 2024 responded to nearly 135,000 requests for assistance. Jill Polander, vice president of patient services, said at least 125 of those calls, annually, are from parents and guardians seeking guidance on how to plan for their kids' futures.

Some families opt for residential facilities. Others cobble together a team of family, friends and paid caregivers that can provide 24/7 in-home care. Both options can be costly − for example, a 2020 report from the National Disability Institute, in partnership with several universities, estimated that a household with an adult with a disability requires, on average, an additional $17,690 a year.

The Groffs said they are still figuring it out.

A 2018 University of Illinois study, which surveyed more than 380 parents of children and adults with disabilities, found fewer than half of those parents made long-term plans about who will take over their child's care. Several hadn't made plans at all, citing financial constraints and lack of resources, and more than 7% of parents in the survey said the topic was too "emotionally loaded" or stressful to talk about.

"It’s normal to have these concerns," Polander said. "It’s OK to ask for help."

Finding the right help

Equally anxiety-inducing for the Groffs is the level of responsibility they feel they'll have to leave to their daughter, who has a family of her own.

“We hate to put that burden on them," Karen Groff said.

But Jessica Hartman, 36, said she doesn't see her brother as a burden. As a special education preschool teacher, she said, "everything Danny taught me I now use in my career." Hartman's husband agreed early on – they'd be ready to take care of Danny.

It can be hard for some parents and guardians to explain how difficult their care duties are, and to find caregiving help from those who understand the level of care that's needed. The Groffs rarely sleep through the night and are tasked with everything from first aid to clean-up after a seizure. An in-home nurse helped for 25 years, but recently retired.

Kena Pearson, CFO for the Foundation for Angelman Syndrome Therapeutics, has a daughter, Ashley, with Angelman Syndrome, a rare neurogenetic disorder. Safety is a big concern, she said. Her daughter is 20 years old and 120 pounds. If she falls, she needs someone to catch her.

“There’s no hitting up Care.com for us and having a date night," Pearson said.

Hartman grew up with Danny Groff and understands what his care entails. The Groffs plan to add Hartman as her brother's guardian. Still, her parents would rather spare her the responsibility of his daily needs by having a nursing staff lined up to care for him in their home, if and when they die before him. Hartman and other family members would still have to help manage those caregivers and his finances to make sure everything runs smoothly.

Danny Groff gets a little more than $600 each month through Supplemental Security Income, Karen Groff said. But that's not enough for him to live on. And to keep government benefits, people with disabilities need to 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 that is untouched," Karen Groff said.

Building a road map for other families battling rare diseases

There is an emotional toll to caring for a child with a rare disease and planning for their future, Polander said, but many caregivers don't want to talk to their family and friends about it because they don't want "their entire world to revolve around caregiving, illness, sickness."

“Parents have so much shame and fear around this topic. It's such a taboo, even in the disability world,” said Rosellen Reif, a mental health counselor in North Carolina who works with patients with disabilities and their families.

Thanks to medical advancements, people with disabilities are living longer, Reif said. Before the turn of the century, many parents of children with disabilities were certain they would outlive their children. For some, that grief came with relief since those parents could see through their child's end-of-life care. Parents who need to make long-term care decisions that extend their own lives are in a "more ambiguous place," Reif said.

Reif said she often rehearses conversations about long-term care with her patients, or helps them write letters to friends and family members. It's most important, Reif said, for the main caregivers (often parents) to be aligned on those decisions before involving others.

Reif also encourages families of people with high care needs to make some transitions early, so that parents can be involved in the early stages of those next steps, and to not overwhelm their kids.

“We don’t want them to lose their parents and in the same week have to move into somewhere new," Reif said. "That's a lot of really difficult transition and loss all at once.”

When her son was first diagnosed, "it was literally terrifying," Karen Groff said. She longed for a community that would understand her situation, and after years, found a Facebook group that helped.

“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 National Organization for Rare Disorders offers support groups and patient advocacy groups for families, too, so that caregivers can "talk to somebody who gets it," Polander said. As part of the organization's help line, call takers also connect families with resources that can help with an array of issues that come up while arranging care.

Community is key, Karen Groff said. That's why, as board president of the Lennox-Gasaut Syndrome Foundation, she partnered with other patient advocacy groups and UCB, a global pharmaceutical company, to create a guide for families of adults battling rare epilepsy. The "C.A.R.E. Binder" is a workbook that helps families organize care and has suggestions on how to talk with loved ones about next steps. It also offers legal and financial guidance.

Keeping "Uncle Danny" safe and happy

The Groffs are still looking for a new in-home nurse to help them in their day-to-day routine. They said they expect that search to take at least another six months because of the nursing shortage, which is exacerbated for specialized care for someone with seizures.

"We're not having luck with that so far," Karen Groff said.

Pearson has had trouble finding care for her daughter, too, and said she supplements her daughter's caregivers nearly double what the state pays them. "Some people don't have that luxury," she said, but "the quality of care that you can find for $11.71 an hour is real low."

Pearson is also looking for an in-home care solution, in case she dies before her daughter.

The Groffs said they just want their son to be safe and happy. And he's happiest when he's around the people he loves, being "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 Groff said.

This story is part of USA TODAY's The Cost of Care series highlighting caregivers from across the country.

Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.

Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.

This article originally appeared on USA TODAY: These parents don't only fear the death of their child. They fear dying first.

Reporting by Madeline Mitchell, USA TODAY / USA TODAY

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