AVM Alliance: A Pediatric Stroke Page

10/02/2026

You send your child to school expecting to hear about their day. Then the phone rings, and everything changes.

For 10-year-old Lilly Heater and her family, that call came after she collapsed on the playground. A ruptured brain AVM led to emergency surgery, 41 days at UCSF, and months of rehabilitation.

Lilly has been working to relearn how to stand, use her hands, and walk. She is back at school, with support from her mom and friends and a recovery journey that is still unfolding. 💚

There is so much work behind those words: “back at school.”

The appointments. The exhaustion. The small victories that are actually HUGE. The uncertainty families carry while trying to help their child have a childhood.

Lilly’s family also recognized how much other families need support. They are creating **Lilly’s Journey** to help families navigating similar medical crises.

That need is deeply familiar to us at AVM Alliance. Sometimes the person who understands what you need is another parent who has sat in that waiting room.

Lilly and her family, we are cheering for your progress and the community you are building. Every child deserves support through recovery. Every family deserves people who understand.

**Please read and share Lilly’s story. Help more people understand why Stroke Has No Age Limit™.**



AVM Alliance is not a medical provider. Always consult your healthcare team before making decisions about care.

10-year-old Lilly Heater of Fresno went to school healthy. Before classes began, she told a friend her head hurt and collapsed on the playground.

09/30/2026

09/30/2026

Thank you so so much 180 Degrees Consulting - Texas A&M University!! The kids are going to just love their cards and we all appreciate you so very much.

09/14/2026

09/04/2026

Sometimes our kids hear us say, “You’re strong. You’ve got this. We’re proud of you.” 💙

But sometimes those same words land a little differently when they come from someone outside of Mom and Dad.

That’s the heart behind our Notes of Encouragement project with Texas A&M’s 180 Degrees Consulting — giving our kids and their siblings a little extra reminder that people are cheering them on.

💌 Request a card here:
https://forms.gle/pbS8cKt5vhNznFwu9

AVM Alliance is not a medical provider. Our programs are for support, education, and advocacy.

09/03/2026

Stroke has No Age Limit. Prayers Up for the Family dealing with this tragic and sudden loss.

His family is now fundraising and raising awareness

09/01/2026

Support group is tonight 7pm CST Sign up Here: https://forms.gle/ZSgcp8YsWusCBPDH6

06/15/2026

💔 When Families Run Out of Options

As parents, we spend our lives trying to protect our children.

But what happens when your child has a rare brain vessel disease, local treatment options have been exhausted, and you believe the care that could help is somewhere else?

This week, a British Columbia mother shared her fight to secure continued treatment for her son Nathan, who lives with a life-threatening brain AVM (arteriovenous malformation). Her story is making headlines, but for many families in our community, the emotions behind it feel painfully familiar.

The details of every medical journey are different.

The fear is not.

It’s the fear of watching your child suffer.
The fear of running out of options.
The fear of hearing “no” when you’re desperately searching for hope.

One quote from Nathan’s mother stopped me in my tracks:

“Every day, worrying that this could be the last day that I could spend with my child.”

No parent should have to carry that weight alone.

At AVM Alliance, we hear stories like this far too often. Families navigating rare brain vessel diseases and pediatric stroke are frequently forced to become researchers, advocates, fundraisers, care coordinators, and caregivers all at once.

Whether you agree with a particular treatment approach or not, one thing remains true:

Families facing brain AVMs need support.
Children affected by stroke and brain vessel disease deserve continued research.
And no parent should feel invisible while fighting for their child.

Today, we’re sending love and support to Nathan, his family, and every family walking a similar path.

💙 Because stroke has no age limit.
🦋 Because rare does not mean alone.
🐷 Because every child deserves hope.

Natasha Hepburn describes her 9-year-old son Nathan as a vibrant and joyful soul, even when he’s faced with life-altering circumstances. When Nathan was 5, he suffered a seizure, and his health quickly took a turn for the worse. Nathan was then diagnosed with an extremely rare and life-threatening...

06/02/2026

Reminder! Parent Support group is tonight. 7pm CST Here is the link to sign up: https://forms.gle/NcopbQFTU97DwgDY9