Private draft — medical review pending. This post shares our family’s perspective and research discussion. It is educational and does not replace advice from your care team.
As a dad, I know how much we want to protect our kids. When ALD is part of your family, you start thinking about what to tell them—and when. How do we explain something we’re still trying to understand ourselves?
Your child might have noticed appointments or heard you talking with a doctor. They might have questions you can’t answer yet. That’s hard, especially when you want to take away every bit of worry.
Every child is different, and every family’s experience is different. But I believe we can be honest with our kids and still give them hope.
Start with what your child wants to know
You don’t have to sit down and explain everything about adrenoleukodystrophy, or ALD, at once. Start by asking a simple question:
“What have you heard us talking about?”
Or:
“Do you have any questions about your appointments?”
Then listen. Your child may be wondering about something completely different from what you expected. Maybe they want to know why they have to go to the doctor. Maybe they want to know if the appointment will hurt. Maybe they’ve heard the word “ALD” and want to know what it means.
You don’t have to answer every possible question today. Start with the one your child is asking. The American Academy of Pediatrics’ guidance for families encourages parents to listen to children and explain health information in ways they can understand as they grow.
Use words that fit your child
For a younger child, an explanation might be as simple as:
“The doctors are helping us learn about something called ALD. That’s why we go to some of these appointments. You didn’t do anything to cause it, and we’re here with you.”
For a school-age child, there may be more questions about why their body needs to be checked. You might explain what their next appointment is for, using the details their care team has given you.
A teenager may want more information and a bigger role in conversations with their doctors. They may also care deeply about who knows about their health. Ask what they want to understand and how they’d like to participate. Give them space to ask their own questions, too.
These are starting points, not rules about what a child of a certain age should know. You know your child, and their pediatrician, genetic counselor, or care team can help you find words that fit their situation.
Be honest about what you know—and what you don’t
This part is hard. As parents, we want to tell our kids everything is going to be okay. It’s difficult to say we don’t have every answer, especially when we’re living with that uncertainty ourselves.
But “I don’t know yet” is an answer. And it can be followed by something your child can count on:
“I don’t know exactly what the doctors will find. We’re going to ask questions, and we’ll figure out the next steps with them. You won’t have to do this alone.”
There is hope in that. There are doctors, genetic counselors, researchers, and families working to understand ALD and support people living with it. What that means for any one child depends on their individual situation.
It also matters what the family has actually been told. An out-of-range newborn screening result means follow-up testing is needed; it does not by itself confirm a diagnosis. A genetic result can also be uncertain. Your child’s care team can explain what their particular results mean and help you decide how to talk about them. HRSA: Newborn Screening Results and Follow-Up; MedlinePlus: Interpreting Genetic Test Results.
Help them know what to expect at appointments
A child may be less focused on the big picture than on what happens tomorrow.
If there’s an appointment coming up, ask the care team what your child is likely to experience and explain it honestly. If a blood draw might pinch, don’t promise they won’t feel it. If there are choices they can make—like bringing a favorite toy or choosing a distraction—let them make those choices.
You can also ask the team:
“How would you explain this appointment to a child my child’s age?”
“What choices can my child make during the visit?”
“Is there a child-life specialist or counselor who can help us prepare?”
There may not be a choice about every part of care, but having a say where possible can help a child feel included.
It’s okay to come back to the conversation
Your child may ask a question, get an answer, and run off to play. They may ask the same question again next week. As they get older, they may want to know more—or need time before they’re ready.
Keep checking in, but let the rest of life happen too. There are still friends, school, games, family, and all the other things your child cares about.
And if your child seems worried or you’re not sure how to help, ask their pediatrician or care team about support. Parents deserve support, too. The American Academy of Pediatrics has guidance for families helping children understand and live with health conditions.
You don’t have to get every word right. Listen, be honest, and let your child know you’re right there with them.
The Lucas Project shares information and family perspectives. It is not a substitute for medical advice. Talk with your child’s pediatrician, genetic counselor, or ALD care team about their results and care.