Honoring Care Partners
Every November, Caregiver Awareness Month recognizes the people who love and care for someone living with a health condition. In the rare disease community, that role often starts unexpectedly and manifests as learning a new language of lab values and specialists, rearranging a career, or moving across the country.
Many of the people in this role don’t call themselves caregivers. They call themselves partners, parents, spouses, or loved ones. The four stories below show why: caregiving isn’t something done to someone, it’s something done with them. They care for each other.
‘I actually like the term care partner because it is a partnership’
— Liz, wife & care partner to Art, living with ATTR-CM
Liz and her husband, Art, have been together for more than 43 years. For a long time, they put Art’s carpal tunnel, numbness in his feet and joint problems down to two decades of football, through high school, college and the pros. When unexplained heart problems appeared, Liz knew there was something more. A genetic test led to Art’s diagnosis of hereditary ATTR amyloidosis in 2023.
“I actually like the term care partner because it is a partnership,” Liz says. “It’s about paying attention, being another set of ears at appointments, asking questions, and sometimes noticing changes that he doesn’t recognize himself. After more than 40 years together, I know when ‘I’m fine’ doesn’t necessarily mean he’s fine.”
Much of that work goes unseen. “I’m constantly paying silent attention to him,” she says.
Because ATTRv is hereditary, the diagnosis didn’t stay with Art alone. Liz realized it could affect their 11 adult children and nearly 30 grandchildren. “My job isn’t to scare them,” she says. “My job is to make sure they have the information we didn’t have.”
Her message to healthcare professionals is direct. “The care partner can be an important part of the healthcare team. Include the care partner in conversations, as long as it is OK with the patient. Ask us, ‘What have you noticed?’”
To other families, she adds: “Don’t underestimate the importance of knowing your family’s health history! It’s the most important legacy you can leave your family. And make sure you take time for yourself.”
‘It takes five to seven people to cover what you do’
— Cliff & Noreen, parents & care partner to Dylan, living with Canavan Disease
When Cliff and Noreen adopted their son Dylan at birth, they could never have imagined what lay ahead. Months later, Dylan was diagnosed with Canavan disease. Their love for Dylan shines through every part of their lives together, as they learned to navigate his complex medical needs while building a life filled with comfort, connection, and joy.
Cliff and Noreen describe days organized around nursing shifts, feeding, respiratory treatments and therapies. Even a short break takes extensive planning. When they took a three-day trip, Noreen’s sister offered a perspective Noreen had never considered: “Do you realize it takes five to seven people to cover what you do?”
Alongside those demands were the everyday moments of parenting: reading, learning and finding ways to make Dylan laugh. Living with uncertainty meant balancing hope with the present. As Cliff shared, “We focus on what we have now with him and the good times.”
‘The most important and deeply rewarding work of my life’
— Jen, mother & care parter to Mason, living with ADH1
For Jen, caring for her son Mason meant living with constant uncertainty.
“Caring for someone living with ADH1 is so much more than a full-time job, especially when they are still too young to tell you what they are feeling,” she says. “Every day, there was the unknown of where Mason’s calcium levels had placed him: in danger of seizures or cardiac arrest, an ER visit, and hospitalization.”
Mason’s levels shifted with physical activity, with inactivity, or simply with being sick. That meant weekly blood draws and close watching. Eventually, Jen made the choice to put her career on hold.
“It was an unexpected sacrifice,” she says, “but keeping him healthy and seeing him thrive has been the most important and deeply rewarding work of my life.”
‘I am her husband.’
— Dave, husband & care partner to Tara, living with LGMD2I/R9
When Tara and Dave met more than 32 years ago, Tara didn’t know she had limb-girdle muscular dystrophy type 2I/R8, or LGMD2I/R9. Today, she sometimes feels guilty that this isn’t what Dave signed up for.
Dave always says that if he could do it all over again, he’d still choose her. It makes her smile every time. He reminds her: in sickness and in health.
“I don’t think of myself as a caregiver,” Dave says. “I am her husband.”
Together, they navigate life’s challenges as a team, with love, faith and support for one another.
What these families share
Across four diseases and four very different families, the same themes come up again and again:
Care is a partnership. Liz, Dave, Cliff, and Noreen all describe care as something shared, not something done for someone.
Care partners see what others miss. Jen watched for signs her young son couldn’t yet put into words. Liz notices when “I’m fine” isn’t the whole story.
Care carries real sacrifice. It can mean careers paused, homes moved, and quiet attention around the clock.
Joy belongs in the picture, too. It shows up in reading together, finding ways to make Dylan laugh, and a husband who would choose his wife all over again.
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To every care partner in the rare disease community: we see the work you do, including the parts no one else sees. Thank you!