What to Say (and Not Say) to a FOXG1 Family
What to say (and not say) to a FOXG1 family
When you meet a child with FOXG1 syndrome or learn that someone you love has received this diagnosis, it’s natural to want to say something kind. You might want to show empathy, offer comfort, or acknowledge the gravity of what that family carries every day.
But many FOXG1 parents will tell you that the words they remember most aren’t always the ones people carefully planned. It’s often the offhand comment that stings, or the quiet, genuine one that sticks with them for years.
The truth is, families affected by FOXG1 syndrome navigate a world few can fully understand, filled with appointments, therapies, medical equipment, seizures, and moments of uncertainty. Yet their lives are also full of laughter, deep love, and joy that can’t be measured.
So if you’ve ever wondered what to say or how to show up, here’s what FOXG1 families want you to know.
A Note Before You Speak
When meeting a child or family affected by FOXG1 syndrome, it’s easy to want to say something comforting or supportive. Most people genuinely mean well, but without experience communicating with families of children with complex needs, it can be hard to know what words will land in a loving way.
The truth is, even the most caring comment can sometimes sting when you’re on the receiving end of a life that doesn’t fit the usual script. That doesn’t mean you shouldn’t say anything; it just means it’s worth pausing first.
Take a moment to consider how your words might be received. Ask yourself: Will this make them feel seen, supported, or understood? If you’re unsure, it’s always okay to lead with honesty and kindness:
“I’m not sure what to say, but I want you to know I care.”
Your heart is in the right place. This guide is here to help you put that care into words that truly comfort and connect.
When You Don’t Know What to Say
It’s completely normal to feel unsure of what to say. You might want to be supportive but worry about saying the wrong thing. The truth is, silence can sometimes feel awkward, and people often fill that space with something meant to comfort - even if it unintentionally misses the mark.
What FOXG1 parents remember most are the moments when someone paused long enough to listen or simply said, “I’m here.” You don’t need perfect words or profound wisdom. You just need to meet them where they are, with empathy.
What helps:
“I can’t imagine how hard that must be, but I’m here for you.”
“That must feel overwhelming sometimes. How are you doing today?”
“I don’t have the right words, but I want you to know I care.”
What can hurt (even if it’s well-intentioned):
“Everything happens for a reason.”
“God gives special kids to special parents.”
“At least they look healthy!”
Why it matters:
Comments that try to make things “okay” can unintentionally minimize what families are going through. FOXG1 parents don’t expect solutions or silver linings- they just want to feel understood.
Sometimes the most comforting thing you can offer is your presence. A listening ear, a soft acknowledgment, or a simple, “I see you.”
When You Want to Offer Encouragement
Most people want to encourage families navigating FOXG1 syndrome. You want them to know you see their strength, that you admire how much love and dedication it takes. But sometimes, words meant as encouragement can land differently than intended.
When you say, “You’re so strong” or “I could never do what you do,” it might sound like admiration, but it can also sound like separation. It can make a parent feel like they’re living on an island of resilience that others can’t relate to.
FOXG1 parents aren’t superheroes. They’re parents who love their children fiercely and are doing what love requires, day after day. Real encouragement recognizes that humanity.
What helps:
“You’re doing an incredible job caring for your child.”
“Your love and commitment really show.”
“I can tell how much strength and heart this takes.”
“You make such a difference in your child’s life.”
What can hurt (even if it’s well-intentioned):
“You’re so strong, I don’t know how you do it.”
“I could never handle what you handle.”
“You were chosen for this for a reason.”
Why it matters:
Phrases like “I could never” can sound like admiration from afar, but they subtly imply distance. Genuine encouragement reminds parents that they’re not alone, that their effort is seen, and that their child’s life is valued.
When in doubt, choose connection over awe. Tell them what you notice, what you admire, and how their love moves you. That kind of encouragement stays with them.
When You Want to Acknowledge the Child
Sometimes people are so focused on the diagnosis that they forget to see the child beyond it. A kind smile or a question about who the child is, not just what they experience, can mean more than you might realize.
Every child with FOXG1 syndrome has their own personality, humor, and spark. They may love music, cuddles, water play, or silly noises. They might communicate through smiles, eye gaze, or sounds that their families know by heart. Seeing that individuality is one of the most meaningful ways to show respect and love.
What helps:
“She has the brightest eyes.”
“He looks so happy in that photo.”
“Tell me what she’s been enjoying lately.”
“I love seeing how proud he looks.”
What can hurt (even if it’s well-intentioned):
“What’s wrong with her?”
“Will he ever walk or talk?”
“I’m so sorry.”
Why it matters:
It’s natural to feel curious or to want to express sympathy, but focusing only on the child’s limitations or medical differences can unintentionally reduce who they are. Every child with FOXG1 syndrome is more than their diagnosis.
When you focus on who they are, not what they can or cannot do, you help parents share the joy that lives inside their child’s life. And that joy is something every parent loves to talk about.
When You Want to Help, But Aren’t Sure How
It’s easy to want to help but not know where to start. You might say, “Let me know if you need anything,” because it feels polite and open-ended. But for many FOXG1 families, that question can be hard to answer. Their days are already full of decisions, appointments, and mental lists a mile long. Asking for help often feels like one more task to manage.
What truly helps is when someone takes the initiative in a specific, thoughtful way. It can be as simple as a text, a meal, or a small gesture that lightens the load.
What helps:
“I’d love to drop off dinner next week. What night would be easiest?”
“Can I pick up coffee for you on my way over?”
“I have a free hour this weekend. Can I help with laundry or dishes?”
“Would your other kids like a playdate so you can rest?”
What can hurt (even if it’s well-intentioned):
“Let me know if you need anything.”
“You should take some time for yourself.”
“If you ever need help, just call.”
Why it matters:
General offers of help are kind but rarely acted on. Specific ones take the emotional weight off the family and make it easier to say yes. FOXG1 families often won’t ask for help, even when they desperately need it. They’re used to doing everything themselves.
By offering something concrete, you’re not just being helpful- you’re being present. And that presence is what builds trust and makes families feel supported in real, lasting ways.
When You Want to Celebrate
Every child’s journey looks different, and that’s especially true for children with FOXG1 syndrome. Progress can take months or even years, and it often comes in small, beautiful steps. Maybe a child learned to lift their head, made eye contact for the first time, or tried a new piece of adaptive equipment.
For families, those moments are monumental. They represent countless hours of therapy, patience, and perseverance. When someone joins in that celebration, it means the world.
What helps:
“That’s incredible progress!”
“I can see how proud she is.”
“He’s been working so hard for this. What an amazing moment.”
“That smile says it all.”
What can hurt (even if it’s well-intentioned):
“My niece did that at six months.”
“That’s nice, but will she ever walk or talk?”
“You must be so relieved she’s finally catching up.”
Why it matters:
Milestones for FOXG1 children don’t follow a standard chart, and that’s okay. Comparing progress or framing it in terms of what “typical” kids do can unintentionally take away from the joy of the moment.
Celebrate without comparison. When you respond with genuine excitement and recognition, you help parents feel that their child’s hard work - and theirs - is truly seen and valued.
When You Want to Stay Connected
When a diagnosis is new, friends and family often rally with messages, meals, and support. But as time goes on, that wave of care can fade. The truth is, for FOXG1 families, the challenges don’t end once the initial shock wears off. Their lives continue to involve therapies, appointments, sleepless nights, and moments of deep uncertainty- alongside the laughter, love, and small victories that keep them going.
What means the most isn’t one big gesture, but consistent presence. A simple message months later can make a parent feel remembered, not forgotten.
What helps:
“Thinking of you today. How are things going?”
“Can I check in next week to see how you’re doing?”
“I’d love to come by for a quick visit if that would help break up your day.”
“I saw this quote and thought of you.”
Why it matters:
Support that lasts beyond the early days of a diagnosis helps families feel less isolated. It tells them they are seen, even when life is busy or hard to understand from the outside.
When in doubt, reach out. Your message doesn’t have to be perfect. Just showing up, again and again, is often what makes the biggest difference!
The Power of Presence
If you’ve ever worried about saying the wrong thing, that alone shows that you care. Your heart is already in the right place. What matters most isn’t having the perfect words; it’s choosing to show up, to listen, and to keep learning.
FOXG1 families don’t expect you to have answers. They simply hope you’ll stay close, stay curious, and see their children the way they do: full of light, joy, and purpose. Every kind word, every small gesture, and every bit of understanding adds up to something powerful, a community built on empathy and love.
If you’re part of the FOXG1 community and would like to share your own words of wisdom or experience, we’d love to hear from you. Reach out anytime so we can continue building understanding, one heartfelt conversation at a time.
FOXG1 Research Center is dedicated to understanding and finding treatments for FOXG1 syndrome and other neurodevelopmental disorders.
Our Team
Drs. Soo-Kyung Lee, PhD. and Jae W. Lee, PhD. are the principal investigators of FOXG1 Research Center. Our team is full of dedicated individuals with the common goal of studying FOXG1 Syndrome to find treatment options and further understand the condition.
Our Publications
To learn more details about our research, please refer to our publications.
