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We’re honored to feature Valerie Brockett as one of our HIE Awareness Month Ambassadors this year. Valerie is a mom to Callie and a devoted supporter of the HIE community. In her story, she shares her family’s journey with HIE, the challenges they’ve faced, and the power of hope that has driven them forward. Through her advocacy, Valerie hopes to inspire and support other HIE families, ensuring that no one has to navigate this journey alone.

From Silence to Strength: Callie’s Story

I had a perfectly healthy pregnancy with my daughter—until 40 weeks came and went, and she still didn’t arrive. Then 41 weeks. Then 42. When I finally went into labor, everything seemed fine. No red flags, no warnings. But when she was finally here… silence. Why wasn’t she crying?

In that moment, our lives changed forever.

We didn’t know what was wrong. No one told us. No one said the words “hypoxic-ischemic encephalopathy.” We left the hospital unaware, carrying home a tiny, beautiful mystery. It wasn’t until I read a small note buried in her medical chart that I even saw the term. That’s how I learned what had happened to my daughter. A diagnosis we never expected. A reality we weren’t prepared for.

Her Apgar scores were 1-1-1, but to us, she was still our number one.

We had no idea what her future would hold. The doctors didn’t paint a hopeful picture. They told us about the challenges, the limitations, the things she might never do. But today, my daughter is exceeding every single expectation. She is thriving. She is living her greatest life. And that is why I share our story—because I want families who are just beginning their journey with HIE to know that there is hope.

Hope carried us through that first year. It was what we clung to when we didn’t know what the next day, the next week, or the next year would bring. And it’s what I want to give to others. I advocate every day—for my daughter, for other families, for awareness—because I know what it’s like to feel lost in this diagnosis. To not know where to turn. To not even have the words to explain what happened.

HIE isn’t always visible. For some children, like mine, it doesn’t show physically. That makes it even more important to educate those around us. I advocate at school, in my community, and online, sharing Callie’s story to help others understand. I want new parents facing this diagnosis to see how far she has come and to know that their children, too, have a future. A future that matters. A future worth fighting for.

I wish I had known more before she was born—what to ask for, what to advocate for in the hospital. I wish I had known about cooling therapy and about precautions that might have helped. That’s why I speak up now. Because awareness can change outcomes. Because no parent should have to find out their child’s diagnosis by reading a note on a chart.

If you are just starting this journey, hold on to hope. Surround yourself with those who understand. Learn, advocate, and believe in your child’s potential. Because our children are the future. And their future is bright.

With hope,

Valerie Brockett



We’re honored to feature Sam Villeneuve as one of our HIE Awareness Month Ambassadors this year. As a dedicated parent and advocate, Sam has made it her mission to spread awareness about HIE and ensure that families like hers have the support and knowledge they need. From organizing HIE awareness efforts in Wisconsin to participating in the Hope for HIE 5K each year, Sam has turned her passion for advocacy into action. Through her story, she shares the importance of visibility, the power of education, and the belief that every voice in the HIE community matters.

Raising Awareness One Step at a Time: Sam and Bren’s Story

When it comes to advocacy, there wasn’t a single defining moment when I decided to get involved—just an unshakable instinct that I had to do something. I wanted to advocate not only for my son, Bren, but for every child and family walking this path.

At first, I had never even heard of HIE. Like so many parents, I found myself navigating a diagnosis I hadn’t expected. But as I learned, I wanted others to know too.

That’s why I reached out to our governor to declare April as HIE Awareness Month in Wisconsin. It was a way to ensure HIE was recognized on a larger scale beyond just our family and community. I also post about HIE every April, sharing the messages and resources from Hope for HIE to help spread awareness.

And every year, we participate in the Hope for HIE 5K. Running has always been important to me. I had dreamed of running races with my kids, but after my son was born, that dream had to shift. Now, running the Hope for HIE 5K is our way of raising awareness and making sure my son gets to be a 5K finisher, too. It’s not just about the race—it’s about showing up, making HIE visible, and being part of a larger movement.

One of the most rewarding parts of this journey has been seeing others learn about HIE. I love teaching people, and when someone understands something new—whether it’s about my son or HIE in general—it means the world to me. It’s also incredible to watch awareness grow in spaces it hasn’t before, like seeing our state officially recognize HIE Awareness Month.

If there’s one thing I wish more people knew, it’s that HIE, like most medical conditions, is always evolving. We are constantly learning new things, and as we do, how we talk about HIE and what we share may change.

For those just starting to advocate, my advice is simple: start small. Share a post. Talk to family and friends. As your confidence grows, expand your reach—share your story with other communities, even take it to a broader audience if you feel ready. There’s no right or wrong way to do it. Your story is powerful on its own. Facts and stats can be helpful, but the real impact comes from sharing your lived experience.

HIE awareness starts with us. And every story told, every conversation started, makes a difference.

With hope,

Sam Villenueve

We’re honored to feature Julie Wanjiku Ndung’u as one of our HIE Awareness Month Ambassadors this year. Julie’s journey with her daughter, Eliana, has been marked by perseverance and determination, particularly in the face of limited resources and awareness in her home country of Kenya. Despite these challenges, Julie has dedicated herself to raising awareness and advocating for better support for HIE families in her country.

Hope Beyond Borders: Julie and Eliana’s Story

Our connection to HIE is through our daughter, Eliana. She suffered HIE at birth, and through this, we’ve learned so much about the condition—and continue to learn each day.

We live in Kenya, where resources and knowledge about conditions like HIE are often scarce. The hospital couldn’t provide us with much information about what had happened. We knew something wasn’t right, but the doctors couldn’t give us any clear answers. We were left to navigate this unknown territory on our own. It was a frustrating and isolating experience.

Everything changed when I met another mother at one of Eliana’s neurologist appointments. She introduced me to the Hope for HIE group, and that’s when I realized something important: though we were in Africa, so many of our struggles were shared by families around the world. The stories I read, the challenges others faced, and the ways they fought for their children—it inspired me to take action.

I started advocating for Eliana and every child who wasn’t getting the help they needed. I pushed back when doctors didn’t listen and started reaching out beyond Kenya for support. It wasn’t just about waiting and seeing what would happen. I knew I could do more to help my daughter. I could find ways to make her life better.

Since then, I’ve tried to reach out to other mothers I meet at appointments, and while it’s still heartbreaking to see how many don’t fully understand HIE, I keep sharing the resources I’ve gathered. I’ve connected with pediatric neurologists and neonatologists to see how we can change things in Kenya. Progress has been slow, but it’s there. I can see it happening.

One of the biggest changes I’ve seen is the introduction of cooling therapy for infants with HIE, something that wasn’t available when Eliana was born. I’m proud to say that after years of advocating, three hospitals in Kenya now offer this treatment. While this is only the beginning, it’s a huge step forward.

In Kenya, I wish more people knew that HIE isn’t some kind of curse or punishment — it’s a medical condition that can happen to any child. I long for a day when medical professionals, hospitals, and the government provide better resources for families facing HIE. I want to see more individualized care plans, accurate diagnoses for conditions like CVI and infantile spasms, and a medical system that truly listens to families.

My advice to others starting their advocacy journey is simple: start small. You don’t have to make huge waves at first. Share a post, talk to family and friends, and then, as you grow more confident, reach out to others. Every small action adds up. If we can help just one family, it’s a win.

With hope,

Julie Wanjiku Ndung’u

We’re honored to feature Zarina Paurobally-Versaci as one of our HIE Awareness Month Ambassadors this year. Zarina’s journey as a mother navigating her son Laith’s HIE diagnosis has driven her to become an advocate in her local community in Australia. Through her advocacy and connection with her hospital’s NICU director, Zarina is working to ensure that future families have access to the support and resources they need in her area.

From Patient-Family to Partner: Zarina & Laith’s Story

Hi, I’m Zarina, mom to my beautiful son Laith.

Laith was born via emergency C-section following a placental abruption during labor. He was diagnosed with mild-to-moderate HIE and underwent therapeutic cooling for 72 hours. In those early days, we were overwhelmed—not only by the trauma of what happened, but by how little clarity we had about what HIE really meant. It wasn’t until weeks later, reading through his discharge papers at home, that I came across the term “HIE” and started searching for answers.

That search led me to Hope for HIE. Finding the website and community groups made a huge difference—it gave me comfort, connection, and a sense of direction when I desperately needed it.

Even though I’m still fairly new to this community, I’ve already seen the power of sharing and advocacy. After our hospital debrief, I reached out to the NICU Director and introduced them to Hope for HIE. With support from the organization, I was able to share printed resources and materials with the hospital team here in Australia. They were incredibly grateful—and committed to making sure these materials reach more families, including through the local children’s hospital where HIE cases are more common.

There’s still so much work to be done to raise awareness. Families navigating HIE are incredibly brave, and I’m constantly inspired by the stories of strength, hope, and resilience that I read within this community.

If you’re new, unsure, or wondering how you can make a difference—start small. Share your story, or simply share the name “Hope for HIE.” You never know who it might help, or what change it might spark. The ripple effect is real—and together, we can make sure no family faces this journey alone.

With hope,

Zarina Paurobally

We’re honored to feature Melissa Akinlawon as one of our HIE Awareness Month Ambassadors this year. When her son was born at the height of the COVID-19 pandemic, she was thrust into the world of HIE with little warning and limited support. Navigating the NICU alone, she leaned on her background in public health and communications to seek answers and become an informed advocate for her son. Now, five years later, she is dedicated to raising awareness, challenging misconceptions about neonatal health, and ensuring that no parent faces this journey without the knowledge and support they deserve.

Shifting the Narrative: Melissa & Stevie’s Story

Before March 2020, I had never heard of HIE. When I envisioned labor and delivery, I never considered the possibility of my baby needing NICU care. But after an emergency delivery due to distress, I suddenly found myself surrounded by a team of neonatal specialists explaining what was happening to my son. I remember hearing the words lack of oxygen, seizure, neurological impact—a flood of medical terms and acronyms, all while machines beeped around us. It took a long time to process what had happened in what was supposed to be a fairytale experience.

Our NICU stay lasted just shy of two months, followed by years of follow-up testing and therapy. To add to the challenge, my son was born at the height of the COVID-19 pandemic. Navigating the NICU and postpartum recovery with extremely limited interaction from family and friends was isolating. But I was fortunate to have an amazing and supportive care team who took the time to explain every step of my son’s care plan. That’s when I made it my mission to learn everything I could about HIE—I wanted to be an informed advocate, not only for my son but also to help my family and friends understand his prognosis.

Through a friend who had also experienced an HIE diagnosis and a NICU stay, I was introduced to Hope for HIE. That connection was life-changing.

In my professional life, I work in public health and communications. I’ve always understood the power of education, advocacy, and evidence-based research. But this time, it was personal. I wasn’t just a professional in the field—I was a mother navigating the complexities of HIE firsthand.

I felt compelled to take action, to share my son’s story—because stories like his help drive scientific research, advance interventions, and highlight the impact of early treatments and therapies. The more we share, the more we push progress forward.

I continue to support the work of Hope for HIE and advocate within the HIE community, ensuring that no parent or family is left without knowledge, resources, or a sense of belonging. I also use my professional platform to educate my peers in public health, pushing for more advancements in neonatal and child health research.

One of the most rewarding parts of my journey in the HIE community has been shifting the narrative about NICU babies. I quickly learned that many people assume most NICU admissions are due to prematurity or a known medical condition during pregnancy. But my son was born full-term. I often heard the question: “Well, what happened?”

That became my window of opportunity to raise awareness about HIE and challenge misconceptions about neonatal health. Conversations like these—whether with friends, family, or medical professionals—help break down barriers and ensure more people understand the realities of HIE.

Today, my son is thriving! He just turned five, and upon first impression, you’d never know the medical journey he’s been through. The therapies, the treatments—everything he has overcome is a testament to early intervention and ongoing support.

For parents new to the HIE journey, one of the best places to start is with a peer support group. When I was too scared to change my son’s g-tube, it wasn’t a doctor or nurse who gave me the most helpful advice—it was another HIE mom who had been in my shoes.

A supportive community makes all the difference, not just for parents but for extended family members, too. It transforms medical appointments, school meetings, and therapy sessions into dialogues instead of one-sided conversations. Hope for HIE is a great place to start—to find connection, encouragement, and even local support networks.

If I’ve learned anything from this journey, it’s that no one should have to navigate HIE alone. Together, we can push for better outcomes, better understanding, and better support—for every child, every family, everywhere.

With Hope,

Melissa Akinlawon

We’re honored to feature Monique Arnoldus as one of our HIE Awareness Month Ambassadors this year. Each year, she channels her energy into making HIE Awareness Month meaningful—not just for her son, Zach, but for her entire community in Dubai. Through hospital and home visits and public speaking ventures, Monique is building a strong network of connection and support.

From One Voice to Many: Monique & Zach’s Story

My name is Monique Arnoldus, and I’m the proud mom of an almost six-year-old boy with severe HIE (Grade III). HIE Awareness Month holds a special place in my heart—not only because of our journey, but also because my son was born in April. Each year, this month becomes an opportunity to honor him, to educate others, and to strengthen the community that has supported us through the most challenging moments of our lives.

Our HIE journey inspired me to become a voice in my community here in Dubai. I started small—sharing prompts in my support groups, decorating spaces in honor of HIE Awareness Month, and encouraging others to do the same. Over time, it grew. I now speak to large crowds about Hope for HIE, visit families with HIE children in the hospital and at home, and connect with doctors who ask me to support new families just beginning this journey.

One of the greatest honors has been being recognized in my community—not just as a mother, but as an advocate. I’ve been nominated three times for Inspirational Mom Awards, but more meaningful than any recognition is when another parent reaches out and says, “I feel seen. I feel less alone.” That’s why I speak up. That’s why I share. Because I know how powerful it can be when one story inspires another.

HIE is incredibly complex. Every child, every family, every outcome is different. But one thing remains the same: your story matters—no matter how big or small. Don’t be afraid to take that leap of faith. You never know who you might help or how much strength you already carry within you.

With hope,

Monique Arnoldus

We’re honored to feature Danielle Clary as one of our HIE Awareness Month Ambassadors this year. Through the loss of her daughter, Sailor, Danielle found herself navigating the HIE community amid her grief. Already an advocate in the CHD and child loss communities, she now hopes to do the same here—honoring her daughters by sharing their stories, raising awareness, and ensuring no family feels alone.

Out of Grief, There Is Love: Danielle, Sailor, and Alessia’s Story

Hi, my name is Danielle. I’m here through the grief of my daughter, Sailor. On September 27, 2024, we welcomed a beautiful, healthy baby girl. She passed all her screenings—she was perfect. But on November 5th, just a day after my husband and I celebrated our first wedding anniversary, we woke up to find her limp and not breathing. She suffered a near-SIDS event, which led to severe HIE. After months of fighting, we said goodbye on February 2, 2025.

This wasn’t the first time I had to say goodbye to a daughter. In 2020, our first baby, Alessia, was born with a genetic mutation and CHD. She was with us for seven weeks before passing away. Navigating child loss once was unimaginable—twice feels impossible. Through my grief, I’ve become a part of the CHD and child loss communities, and now, I hope to do the same here, through Hope for HIE.

In their names, I will keep going. I will learn, advocate, and share their stories so they are never forgotten. Because out of grief, there is love. And I want others to know—you are never alone. Your child’s name, your love, and your story will never die; it will always matter.

With Hope,

Danielle Clary

This letter was transcribed from Danielle’s original video, where she shared her story in her own words.

We’re honored to feature Bailey Brooks as one of our HIE Awareness Month Ambassadors this year. Through her personal experiences, Bailey is committed to raising awareness, sharing support, and fostering a sense of connection within our community. Her and her daughter Adalyn’s story is one of empowerment, action, and a deep desire to ensure no family feels alone in their HIE journey.

The Power of Connection: Bailey and Adalyn’s Story

I’m a mother to a wonderful 11-month-old daughter, Adalyn, who was born with HIE. Whenever someone asks, “What is HIE?” it motivates me to share her story. Raising awareness starts with these conversations—helping others learn about HIE and what it means for families like ours.

I share Adalyn’s journey and the stories of others to educate those around me. Social media has been a powerful tool for spreading awareness and connecting with families who are navigating similar challenges. What truly inspires action in this space is the desire to help others—to let them know they’re not alone. Seeing the impact of support and understanding motivates me to keep going.

The most rewarding part of being involved in the HIE community is witnessing the connections formed between families. It’s incredible to see people come together, share experiences, and find support they didn’t even know existed. Because of these efforts, more people are talking about HIE, accessing resources, and feeling empowered to advocate for their children.

One thing I wish more people knew about HIE is how impactful early intervention can be. It can make a huge difference in outcomes for children and their families. Raising awareness about this is so important for ensuring more families get the support they need.

For anyone wanting to get involved but feeling unsure—just start. Connect with a support group, share a post, or talk to a friend. Even small actions can make a big impact. Take that first step, and you’ll find your way.

With hope,

Bailey Brooks