AVM Alliance: A Pediatric Stroke Page

09/16/2025

For families living with brain vessel disease, time is measured in scans, procedures, and follow-up appointments.
But childhood doesn’t pause for recovery. PT, OT, and speech therapy fill hours while friends are at school, playing together, and planning the next big social event.
💜 Awareness means remembering there is always a child behind the diagnosis — and these kids need to be included in every way possible.
AVM Alliance — Stroke Has No Age Limit™
www.avmalliance.org

09/15/2025

Will people understand?
Maybe not always.
Awareness doesn’t start with statistics — it starts with stories. And each story opens eyes and brings light where silence once lived.
Families facing brain vessel disease carry truths the world can’t always see. By listening, learning, and sharing, we not only create space for understanding, but we spread the urgent message that this disease must be recognized and taken seriously.
Not everyone will understand what families go through. But every story shared makes the invisible a little more visible.
Awareness saves lives. Awareness brings hope.
🌐 www.avmalliance.org
AVM Alliance — Stroke Has No Age Limit™

09/14/2025

Some of the hardest battles are invisible. But families still feel every bruise.Living with brain vessel disease means carrying scars that the world can’t always see. Awareness means remembering that the invisible weight is just as life-changing as what can be seen.
💜 www.avmalliance.org
AVM Alliance Stroke Has No Age Limit™

09/13/2025

Families facing brain vessel disease live with an empty chair that moves with them.

At the dinner table — when hospital stays keep a child away.
In the classroom — when mental fatigue interrupts learning.
On the sidelines — when loss of limb function keeps them from the game.

Aneurysms don’t just affect the brain. They leave gaps in every space a child belongs.

Awareness means pulling up another chair — making sure no child or family sits in this fight alone.
💜 www.avmalliance.org

09/12/2025

Warrior Spotlight: Camden. Every step forward is a victory.
We’re so proud of you, Camden.

Camden was born with an AVM, one that ruptured in his spinal cord — leaving him paralyzed. What looked impossible just months ago is now reality: Camden is walking again with a walker!

His courage and determination, along with the love of his family and care team, remind us that AVM journeys are long, hard, and often unseen… but hope is real.

At AVM Alliance, we are honored to walk alongside Camden’s family, and we celebrate every step forward with them. Please join us in cheering Camden on as he continues his fight and inspires all of us.

A 12-year-old boy from Owensboro was discharged today from University of Louisville Hospital after suffering a rare medical emergency that left him paralyzed from the neck down.

09/12/2025

Aneurysms don’t just rupture in the brain — they rupture into a family’s life.

For many parents, silence is no longer comforting. Silence might mean something is wrong, and sometimes the quiet between breaths feels louder than any noise.

The trauma doesn’t end when the hospital stay does. Families carry those sounds — and the silence — long after the world moves on.

Awareness means remembering that healing is not quick, and support doesn’t end at discharge. The echoes of fear live with families every day — and that fear is justified.

Awareness means standing with us in both the noise and the silence. By spreading awareness, we turn silence into understanding, and understanding into change.
💜 www.avmalliance.org

09/11/2025

Imagine living every day asking yourself…
“What if it bleeds at school?”
“What if they have a seizure during sleepover?”
“What if the headache isn’t ‘just a headache’?”

This is the EVERY DAY reality for families living with brain vessel disease. The world sees a child; parents see the invisible risk every second.

Awareness means understanding the unseen weight families carry.
AVM Alliance -- Stroke Has No Age Limit™
www.avmalliance.org

09/10/2025

Stories like Cillian’s remind us: brain bleeds and pediatric strokes know no borders. Children everywhere face AVMs — dangerous tangles of blood vessels in the brain. These conditions don’t wait for adulthood.
Awareness saves lives. Support changes futures. These children matter. 💜
Help us help children diagnosed with brain vessel disease: www.avmalliance.org
Stroke Has No Age Limit™

Fundraising has begun for Cillian who was rushed to Temple Street Children’s Hospital for emergency surgery

09/10/2025

It’s important to understand the trauma our kids have faced: Trauma isn’t just the bleed or the surgery — it’s the after. The hospital sounds, alarms, separation anxiety, and fear that lingers.
Many of our kids struggle with nightmares long after discharge. Trauma rewires routines, school, even friendships. Everyday people often assume “kids bounce back.” The truth: they carry scars both seen and unseen.
Imagine waking up attached to machines, relearning how to speak or walk, or missing months of school.....Now imagine doing it as a CHILD.
That’s the reality for kids fighting big medical battles. Understanding their trauma is the first step in helping them heal. 💜

AVM Alliance
Stroke Has No Age Limit™

09/09/2025

Every 18 minutes someone in the U.S. is diagnosed with a brain aneurysm. For children, this can mean a sudden stroke — and families thrown into a world of fear, hospitals, and uncertainty.

That’s why AVM Alliance sends Messages of Hope: Notes of Encouragement. These letters remind children and parents that they are not alone, that someone cares, and that hope is still alive — even in the hardest hospital moments.

Just $5 helps us deliver these handwritten notes to 3 facing brain vessel disease.
👉 Please help us reach more families.
https://www.avmalliance.org/campaigns/