How to help children cope with a diagnosis of Huntington’s disease

The other week, I hit what I like to call the trifecta of family wins.

My wife and daughter actually laughed at one of my puns (a rare feat); I managed to find something my wife, Jill, couldn’t see (she usually finds the things I lose); and, perhaps most surprising of all, Jill said I gave better advice than she did.

Anyone who knows Jill will understand why that third win is a headline in itself. She’s the advice-giver in our family, the one friends and strangers turn to for wisdom, especially when it comes to navigating life’s toughest twists, turns, and conversations.

Here’s the backstory: Someone reached out to us, seeking guidance on how to talk to their children about a loved one’s diagnosis with Huntington’s disease. It’s a heavy question, and Jill answered with thoughtfulness and empathy.

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My wife, who is gene-positive for Huntington’s, has always understood that telling people, especially children, about a diagnosis can be dicey. You don’t want to overwhelm them with too much information, but you also don’t want to leave them in the dark.

Her advice was simple: Share what’s appropriate for their age. Kids process things differently at different stages of development, and the last thing you want is to burden them with more than they can handle.

She often reflects on how we talked with our daughter, Alexus, over the years. We didn’t sit her down for one big, dramatic conversation. Instead, we regularly checked in with her, answered her questions honestly, and made sure she knew she could always come to us.

Jill admits that talking about Huntington’s — or any difficult topic — is one of the hardest things a parent can do. But she also believes it’s important to show emotion, to let your kids see that it’s OK not to be OK. Children watch how we handle tough news, and it’s our job to give them a solid foundation, to let them know we’re always there to answer their questions, no matter how difficult they are.

My perspective

When it was my turn to offer advice to the person who reached out to us, I found myself thinking about the everyday moments — those mundane, routine conversations we have as families. How do you usually share news with your kids? Do you and your partner first talk things over privately, mapping out what you want to say? Or do you just wing it, trusting your instincts in the moment?

My advice was to lean into what has worked for you in the past. Replicate the routines and rhythms that make your family feel safe and understood.

Jill surprised me by smiling and clapping her hands — a rare public endorsement!

Later, she told me my advice was incredibly insightful, and while she stood by her own, she hadn’t really considered the importance of normalcy when talking to people about hard things. Sometimes the best way to support your kids is to keep things as familiar as possible, even when the subject matter is anything but.

Talking about a diagnosis like Huntington’s disease will never be easy. But by balancing honesty with empathy and weaving these conversations into the fabric of your family’s everyday life, you can help your children feel secure — even when the ground beneath you feels unsteady.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.