AVM Alliance: A Pediatric Stroke Page

04/11/2026

There are moments no parent is ever prepared for.
One phone call.
One symptom.
One moment where everything shifts.
A young boy in Oregon is now fighting for his life after a sudden brain bleed — and his entire community is rallying around him with prayers, support, and love.

💔 What People Don’t Always See

Behind headlines like this is a reality families know too well:
• The fear of the unknown in those first hours
• The overwhelming medical decisions that come fast and heavy
• The moment you realize life may never look the same again
• The quiet question every parent asks: “Will my child be okay?”

🦋 Why Stories Like This Matter

Brain bleeds in children can be caused by underlying conditions like AVMs (arteriovenous malformations), aneurysms, or other vascular issues — many of which have no warning signs.
That’s why awareness matters.
That’s why community matters.
That’s why you matter.

🤍 From One Family to Another

To this family in Oregon —
You are not alone, even if it feels like it right now.

There is a whole community of parents who understand:
• the hospital rooms
• the waiting
• the strength it takes just to breathe through the day

We are holding space for you.
We are praying with you.
We are standing with you.

📣 How You Can Show Up
• Drop a 💙 or 🦋 in the comments to send love
• Share this post to spread awareness
• Hug your people a little tighter tonight

If your family is walking through something like this, AVM Alliance has free tools and support to help you organize care and ask the right questions.

A Bend fourth grader remains in critical condition after a ruptured AVM caused a brain bleed. The community has raised thousands to support his family during the medical crisis.

04/07/2026

Reminder: Parent support group tonight at 7pm CST.

02/28/2026

Today is Rare Disease Day.

And somewhere right now, a parent is sitting in a hospital room hearing words they’ve never heard before.

AVM.
Aneurysm.
Malformation.
Stroke.

They didn’t know children could have strokes.
They didn’t know brain vessel disease even existed.

But it does.

And it changes everything.

At AVM Alliance, we stand beside families navigating pediatric brain vessel disease — helping them organize information, ask better questions, and feel less alone in the scariest moments of their lives.

Because rare shouldn’t mean invisible.
And it definitely shouldn’t mean isolated.

💜 1 in 10 Americans lives with a rare disease (NIH).
💜 Many are diagnosed in childhood.
💜 Stroke has no age limit.

If you are a parent walking this road — we see you.

If you are a provider — thank you for fighting with us.

If you are part of this community — share this post and help us make rare less lonely.

02/16/2026

When 5th Graders Lead With Kindness… 💌

Mrs. Gonzales’ 5th grade class at Willis ISD did something extraordinary.

They made Valentine’s cards for every single AVM Alliance warrior child — and their siblings.

Children writing to children.
Kids choosing kindness for kids walking through brain surgery, recovery, therapies, and life after hemorrhagic stroke.

These beautiful, hand-drawn hearts, robots, smiley faces, and messages were mailed out to families across the country.

To Mrs. Gonzales and her class — thank you for teaching compassion in action.
You didn’t just make cards.
You reminded our families they are seen.

And to our warrior families — check your mail soon. 💛

02/05/2026

Big news! The House just passed a package of appropriations bills that reopens the government and includes some significant NORD priorities, including:

• The Accelerating Kids’ Access to Care Act, which would reduce red tape for out of state providers treating children with complex medical conditions on Medicaid

• The Mikaela Naylon Give Kids A Chance Act, which includes a reauthorization of the Rare Pediatric Disease Priority Review Voucher Program (RPD PRV), the RARE Act, and new requirements to increase clinical trials for children with rare cancer

• An extension of Medicare telehealth flexibilities, making it easier for providers to see patients covered by Medicare in the comfort of their own homes

• Policies to restrict pharmacy benefit managers (PBMs) from making money on the price of rebates, driving up patient out-of-pocket costs for certain high-cost therapies

In addition to working closely with bill champions on these issues, NORD recently published an updated white paper on the impact of the RPD PRV program. Since its inception, 63 PRVs have been awarded across 47 rare pediatric diseases. Of these diseases, many typically lead to death before the children reach adulthood. Prior to the creation of the RPD PRV program, only four of these 47 rare pediatric diseases had any FDA-approved treatments. Read the paper: https://bit.ly/3M2A7k7

The reauthorization of the PRV program and the accompanying bills will speed up innovation and access, ensuring that more patients have a chance at a life not limited by rare disease.

The bill, previously passed by the Senate, now heads to the desk of the President to be signed into law. Rare patients cannot wait any longer — the time is now.

02/03/2026

Reminder -- Support group meeting is tonight at 7pm CST. We'd love to have you join us.

01/14/2026

💌 Want to Help Us Spread Valentine’s Day Love? 💌

Our AVM Alliance Valentine Card Exchange is back for 2026 — and businesses can be part of something truly meaningful.

✨ How Businesses Can Get Involved:
• Send Valentine cards to one of our Warriors
• Invite your employees or team to make cards together
• Help remind a child or teen facing brain vessel disease that they are seen and supported

📬 The sign-up link is shared inside our private AVM Alliance support group to protect our families’ privacy.

🏢 Businesses & organizations:
If your company would like to participate or coordinate employee card-making, please email us at:
📧 info@avmalliance.org

Every card matters. Every message counts.
Thank you for helping us build connection, kindness, and courage — one Valentine at a time 💖

01/06/2026

Tonight at 7pm CST 🤍

If you’re a parent walking this road — whether your child is here with you, or lives on in your heart — you are not alone.

Our AVM Alliance Parent Support Group is a safe, gentle space.
• You can listen
• You can speak
• You can come exactly as you are

AVM Alliance -- Stroke Has No Age Limit
www.avmalliance.org

01/01/2026

Hello, New Year 🤍
This isn’t a “new year, new you” kind of post.
Because our community doesn’t reset at midnight.

Some of us are carrying scars, medications, anniversaries, missed milestones, and quiet wins that never make headlines. Some are stepping into this year still holding fear — and others are holding fierce hope they didn’t know they had.

At AVM Alliance, we’re walking into the new year the same way we always do:
• Together
• Honestly
• One family at a time

We don’t promise easy.
We promise presence.
We promise clarity when things feel overwhelming.
And we promise to keep showing up — for the hard days and the hopeful ones.

If you’re here reading this, you belong here.
And we’re really glad you’re with us as this next chapter begins.

✨ Here’s to a year of community, courage, and a village that cares for one another.

— AVM Alliance -- Stroke Has No Age Limit™
www.avmalliance.org

12/28/2025

A teen. A rupture. A diagnosis most people have never heard of. And a story that needed to be told. 🦋🧠

This powerful survival story shines a light on arteriovenous malformations (AVMs)—a rare brain condition that can change a family’s life in an instant.

Stories like this matter because:
• AVMs are often silent until they’re not
• Stroke can happen at any age
• Awareness saves time, and time saves lives

We’re grateful when families and journalists help make the invisible visible. Every shared story helps another parent recognize symptoms, ask better questions, or feel less alone.

AVM Alliance -- Stroke Has No Age Limit™
www.avmalliance.org

A high school senior on Indy's north side is raising awareness after suffering a rare brain condition that almost took his life.

12/23/2025

These comfort stuffies were delivered to Texas Children's Hospital, and we were so grateful to receive this photo today showing them in good hands.

Each stuffy represents a moment of comfort, courage, and connection for a child navigating medical care. Seeing them held by the incredible professionals who support these kids every day reminds us why this work matters so much.

Thank you, Texas Children’s Hospital, for welcoming these small comforts into such big moments. We know they will bring so much comfort to children who truly need it. 🧸🦋

AVM Alliance — Stroke Has No Age Limit

12/04/2025

Raisa’s Brave Recovery After a Sudden Brain Hemorrhage
Please join us in sending strength and love to Raisa and her family. Her story was released today, and it reflects an experience many in our community know all too well.

In mid-May, nine-year-old Raisa went from a normal morning to a medical emergency within hours. Her headache progressed to vomiting, then suddenly to weakness on one side.
Her mom — a nurse who recognized the red flags — called 911 immediately. EMS responded, recognized the severity, and arranged a helicopter straight to UPMC Children’s Hospital of Pittsburgh.

Imaging showed a brain hemorrhage from what was likely an AVM rupture, causing dangerous pressure on her brain.
Neurosurgeon Dr. Cody Nesvick performed emergency surgery to decompress her brain, remove the malformation, and place a shunt to manage swelling.

What followed is the part most families never forget:

• days on a ventilator
• seizures
• pneumonia
• uncertainty with every sunrise
• and the quiet hope that your child will open their eyes again

And then, after weeks of therapy — a moment of pure grace:

Her first words after surgery were: “Mommy, I love you.”

Since then, Raisa has worked through intensive physical, occupational, and speech therapy. She has relearned movement, rebuilt her voice, and rekindled her passions for dance and piano. Her recent angiogram shows no residual AVM.

Every AVM journey is unique, but Raisa’s story touches something deep within our community — the fear, the waiting, the miracles, the slow rebuilding, and the fierce love that carries families through.

If you’re a parent walking this path, you are not alone.
If you’re a survivor, we honor the strength you carry every day.
And if you’re grieving, we see you. We hold space for your child, always.

You can read Raisa’s full story here:
https://share.upmc.com/2025/12/raisa-brain-surgery-story/

For families needing guidance, our Hemorrhagic Stroke Toolkit and care resources are always available.
www.avmalliance.org
AVM Alliance: Stroke Has No Age Limit™

Discover 9-year-old Raisa's inspiring recovery from a sudden brain injury and the expert care at UPMC Children’s that made it possible.