AVM Alliance: A Pediatric Stroke Page

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.

12/02/2025

Tonight at 7pm CST, our AVM Alliance Parent Support Group meets again.
Whether your warrior is here with you on Earth or held in Heaven, you are welcome and supported.

Our monthly meeting is a place where parents can exhale, connect, and feel understood during one of the hardest journeys a family can face.

During part of tonight’s session, we will also offer an optional breakout discussion about Avery for School — our new support tool designed to help kids with memory, organization, and executive-function challenges after stroke, surgery, or long hospital stays.

If you or another parent could use a safe space tonight, we’d love to have you.

Meeting time: 7pm CST
All parents in the AVM, pediatric stroke, and brain vessel disease community are welcome.

You don’t have to walk this road alone. 💜

12/02/2025

🌟 Today is Giving Tuesday.
And somewhere this morning, a parent is waking up to a nightmare they never imagined — a stroke, a rupture, a diagnosis they didn’t even know children could have.

When a child faces pediatric stroke or brain vessel disease, families are overwhelmed and terrified. AVM Alliance exists because no parent should navigate that alone.

Your support today helps us send:
✨ Parent care binders for hospital days
✨ Comfort stuffies to kids recovering from procedures
✨ “Avery for School” tools to support memory and learning
✨ The Pediatric Stroke & Brain Vessel Disease Toolkit
✨ Webinars, guidance, and community support rooted in lived experience

Every gift today brings tools, comfort, and hope to families who need it most.
Donate here:
🔗 https://www.avmalliance.org/donate/

Thank you for helping us show up for them. ❤️

12/02/2025

🌟 Today is Giving Tuesday.
And somewhere this morning, a parent is waking up to a nightmare they never imagined — a stroke, a rupture, a diagnosis they didn’t even know children could have.

When a child faces pediatric stroke or brain vessel disease, families are overwhelmed and terrified. AVM Alliance exists because no parent should navigate that alone.

Your support today helps us send:
✨ Parent care binders for hospital days
✨ Comfort stuffies to kids recovering from procedures
✨ “Avery for School” tools to support memory and learning
✨ The Pediatric Stroke & Brain Vessel Disease Toolkit
✨ Webinars, guidance, and community support rooted in lived experience

Every gift today brings tools, comfort, and hope to families who need it most.
Donate here:
🔗 https://www.avmalliance.org/donate/

Thank you for helping us show up for them. ❤️

AVM Alliance is not a medical provider. Always consult your healthcare team for medical guidance.

11/28/2025

🎉 A Huge Shoutout to Our TAMU 180 Degrees Heroes!

We have to give a special thanks to the incredible students from Texas A&M’s 180 Degrees Consulting group. These amazing young people rallied behind us during the Brazos Valley Gives event. They said, “We can do this,” and they really meant it.

In that critical one-hour window, they pushed tirelessly to help us gather more donations than any other organization. Because of their dedication, we won that $1,000 award—and it’s all thanks to their belief that every bit of support counts.

11/26/2025

Our Stuffy Project Wrapped Up With SO Much Love

Sometimes a small plush carries a big message: You’re not alone. Someone is thinking of you. Your courage matters.

This year, our Stuffy Project did exactly that — and then some.

✨ What We Achieved Together

More than 150 Stuffies made their way to:
• Texas Children’s Hospital – Houston
• Texas Children’s Hospital – Austin
• The Pediatric Stroke Clinic in Houston
• And families all across the United States, from first-time diagnoses to long-term warriors who needed a little extra comfort this season.

Each Stuffy was paired with love, hope, and the gentle reminder that childhood stroke and brain vessel disease don’t get to take away the magic of being a kid.

💛 From Our Community to Theirs

These Stuffies didn’t appear out of thin air.
They came from:
• Parents who know the fear of waiting rooms
• Siblings who understand the chaos of medical life
• Friends who want to make sure no child faces stroke or AVM journey alone
• Supporters who simply believe in kindness

🙏 Thank You

Whether you donated a plush, shipped a box, spread the word, or cheered us on — you made this happen.
Your generosity helped turn a difficult season into a softer one for so many families. PetSmart

Our beloved butterfly pig mascot will be hitching a ride on every Project Stuffy shipment, reminding each child that a whole community is in their corner.
www.avmalliance.org
AVM Alliance: Stroke Has No Age Limit™

11/21/2025

There are things you don’t learn until you’re already in the deep end.
Things that should have been said sooner.
Things that would have changed the way you breathed through those first terrifying days.
Here are the truths every parent deserves to hear before they’re drowning in paperwork and fear:

You’re allowed to ask for every report, scan, and summary — they belong to you.

You’re allowed to say, “I don’t understand. Please explain it again.”

You don’t have to carry the entire care plan alone.

And your fear doesn’t cancel out your strength — they often show up together.

If you’re early in this journey, you’re not behind.
You’re not failing.
You’re learning a language no parent ever thought they’d need.

AVM Alliance stands with you — in the questions, the binders, the tears, and the tiny victories you fight for every day.
www.avmalliance.org
AVM Alliance: Stroke Has No Age Limit™
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11/20/2025

When a child has a stroke or AVM rupture, families are suddenly thrown into a world they never expected to navigate — specialists they’ve never heard of, decisions they don’t feel prepared to make, and a terrifying sense of “What do we do next?”

That’s where AVM Alliance steps in.

When Evan’s family reached out, they were searching for answers with urgency and fear every parent can understand.
We didn’t provide the therapy, and we didn’t run the study —
but we did what we do best:
we helped connect them with the right specialists at the right time.

Because sometimes the most life-changing support isn’t a treatment.
It’s a clear path.
It’s someone saying, “Here’s the next step. You’re not alone in this.”

Today, Evan is making incredible strides through virtual-reality rehab at UTHealth Houston, and his journey is featured in their news. His story is one of resilience, innovation, and a family who refused to give up — and we are honored to have played a small role in helping them find the right door to knock on. Evan -- We are SO Proud of how hard you have worked and how much you have overcome!

If you’re a parent, caregiver, or survivor feeling lost in the maze of brain vessel disease, please know:
You don’t have to navigate this alone.
We’re here to help you understand your options, connect with experienced medical teams, and make informed, empowered decisions in the middle of the storm.

AVM Alliance — bringing clarity, community, and compassion to families facing the hardest moments of their lives.
www.avmalliance.org

Evan Cadena was 19 years old when he suffered an ischemic stroke in May 2023. It was the third time a stroke caused him to lose mobility in the right side of his body since he was 16, when doctors in the Rio Grande Valley found an arteriovenous malformation, or AVM, in his brain.

11/18/2025

Your child is not their diagnosis.
Not their challenges.
Not their hardest days.

They are still the same child you love —
the one with a spark, a story, and a soul far bigger than any chart or label could ever hold.

A diagnosis may shape the journey,
but it does not define who they are.
And it never will.

You’re doing an incredible job, even on the days it doesn’t feel like it.
www.avmalliance.org
AVM Alliance -- Stroke Has No Age Limit™

11/17/2025

Healing isn’t loud.
Most days look ordinary…
until you realize how far you’ve come.
The world celebrates the big milestones — the victories you can photograph.
But you see the quiet ones: the extra step, the calmer evening, the brave moment your child didn’t even know was brave.
And those little moments?
They count more than anyone realizes.

🧡 Your child is growing in ways the world can’t measure.
🧡 The small steps are the big steps.
AVM Alliance -- Stroke Has No Age Limit™ -- www.avmalliance.org

11/16/2025

Some nights, it’s not the big medical updates that weigh the most.
It’s the tiny things nobody else sees:
the meds you triple-checked
the seizure worries you deal with
the bedtime routine that now involves courage you never asked to have
the fear you swallowed so your child wouldn’t see it
the hope you held onto even when today was hard

You are not alone in this.
🧡 We walk this with you — one breath, one night, one next step at a time.

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