How to Support a Rare Disease Family: Advice That Applies Beyond FOXG1

“When the road is hard, the people who walk beside you matter most.”

Slowing Down, Seeing More

When a family you love is handed a rare disease diagnosis — like FOXG1 syndrome — you want to help. You might drop off a casserole, send a heartfelt text, or offer to babysit. And then… life goes on. But for the family? Life doesn’t go back. It becomes something entirely new.

In the world of rare disease parenting, everything slows down. Milestones are measured in new ways. A smile. A sound. A quiet moment of connection. And those small wins — the ones most people take for granted — become cause for celebration. These families are learning to live inside the “what is,” not just the “what should be.” And that shift changes everything.

Supporting a rare disease family is not about grand gestures or knowing exactly what to say. It’s about presence. It’s about learning to see the world a little differently — and showing up for the journey.

8 Ways to Support a Rare Disease Family

(That Apply Beyond FOXG1)

1. Show Up Without Waiting to Be Asked

It’s easy to say, “Let me know if you need anything.” But when a family is in survival mode, asking for help can feel like another job.

Try being specific instead:

• “Can I drop off dinner Wednesday?”

• “I’m headed to the store — can I grab you something?”

• “I’m free for two hours this weekend. Want me to take the siblings to the park?”

Even the smallest acts of support — a coffee on the porch, an errand run, folding laundry — can lift a massive weight. The magic isn’t in what you do. It’s that you showed up.

2. Celebrate the Little Things (That Aren’t Little at All)

A purposeful movement. A longer stretch of sleep. A quiet moment of peace.

What looks like a “tiny step” to others may be a giant leap in a rare disease household. These milestones are often hard-won and deeply emotional — they deserve fanfare.

If a family shares a win, no matter how small it seems to you, cheer wildly. Say things like:

• “That’s amazing!”

• “I see how much work that took.”

• “Wow. I’m so happy for you.”

Your joy matters. Your validation matters. You’re helping reflect back the beauty they live every day.

3. Keep Checking In (Especially After the Crisis Passes)

The flood of support after a diagnosis, hospitalization, or major event is often strong — at first.

But FOXG1 isn’t a sprint. It’s a lifelong, ever-evolving marathon.

The truth is, support is often most needed long after the dust settles — when the appointments pile up, progress feels slow, or new challenges arise.

Send a “just thinking of you” message. Mark the diagnosis anniversary. Remember that hard February they went through last year. Support that sticks around is the kind that heals.

4. Learn a Little, Listen a Lot

You don’t need to be a FOXG1 expert. But taking 10 minutes to read about the syndrome, or asking, “What’s been hard lately?” can mean the world.

Even more important? Listening.

These parents carry heavy mental loads. They manage therapies, feeding tubes, seizures, mobility needs, siblings, insurance calls, and so much more. Often, they just need someone to hear them without rushing in to fix it.

Say:

• “That sounds really hard. I’m here.”

• “I’m amazed by everything you’re doing.”

• “You don’t have to explain — I just want to sit with you in it.”

5. Respect the Family’s Pace (and Privacy)

Some parents will open up about everything. Others are still figuring it out themselves. Let them lead. If they don’t respond to texts right away, or if they pull back from social gatherings, trust that it’s not personal — it’s bandwidth.

Keep the door open with gentle consistency: “Thinking of you.” “No pressure, just saying hi.” “Here if you need anything.”

Your quiet presence might be more comforting than you realize.

6. Remember the Siblings

Rare disease doesn't just affect one child — it touches the whole family.

Siblings often grow up fast. They learn medical lingo, feel protective, and carry unspoken worries. They also experience moments of jealousy, guilt, and confusion — and all of it is valid.

Support the siblings by:

• Asking about their interests

• Including them in plans

• Telling them how proud you are of their compassion and strength

They’re often the unsung heroes. Let them shine, too.

7. Know That the Path Is Not Linear

Progress can be thrilling — but it's rarely a straight line.

One week might bring new skills, communication breakthroughs, or a joyful trip outside. The next might involve hospital stays, unexpected regressions, or setbacks no one saw coming.

Families often live in two worlds at once: hope and heartbreak. Support that shows up through both the highs and the lows is the kind that truly holds.

8. Offer Hope, Not Pity

These children are not tragedies. Their families are not defined by diagnosis alone.

They are fierce, funny, tender, and determined. They light up when they hear their favorite song or feel the breeze outside. They defy expectations. They teach everyone around them how to really listen — and how to love without conditions.

So if you want to offer something, offer this:

• “I see how incredible your child is.”

• “Thank you for sharing your story.”

• “I believe in your family.”

That belief goes a long, long way.

In Closing: Your Love Matters More Than You Know

Supporting a rare disease family isn’t about knowing all the right words or giving the perfect gift. It’s about staying present — when it’s quiet, when it’s hard, when it’s beautiful, and when it’s uncertain.

The families walking this path are some of the strongest, most compassionate, most resilient people you will ever meet. And they shouldn’t have to walk it alone.

So check in. Keep showing up. Celebrate the little things. And remember: your love and presence might be the thing that gets them through another day.

Want to Do More?

• Share this article with your community.

• Learn more about FOXG1 syndrome at foxg1research.org

• Donate to help advance research

💜 Thank you for being part of a world that cares.