We’re constantly inspired by the incredible families who not only navigate the challenges of their journey but also share their stories, support, and kindness to uplift others.
Families like The Aragon Family, who are actively working with their local advocacy organization to ensure that every family has access to the care and resources they need, show just how powerful community and connection can be. Their commitment to spreading awareness and giving back is not only a beautiful reflection of what Hope for HIE is all about—a reminder that every story and journey can make a difference.
Can you share a bit about your connection to Hope for HIE?
Gianna was born on July 20, 2021, at 40 weeks—a full-term baby after what had been a healthy and uncomplicated pregnancy. Everything changed the moment she was born. She was unresponsive, needed 30 minutes of resuscitation, had an APGAR score of 0, 3, and 5, received a blood transfusion, and was placed on a ventilator. She was quickly transferred to a higher-level NICU, where she spent 7 days on ECMO and underwent cooling therapy for 72 hours.
Her NICU stay lasted 68 days, which somehow felt like both the longest and shortest days of our lives. When we met with the medical team after her MRI, we were given little hope. The scan showed severe brain damage, and we were told she would likely be highly medically complex—possibly dependent on oxygen and unlikely to do much.
Throughout her stay, Gianna faced so many challenges. She had severe reflux, often throwing up her medications and feedings, and eventually needed a G-tube to be discharged.
During this difficult time, the NICU social worker introduced me to Hope for HIE. She warned me not to go down a rabbit hole, reminding me that every child is different and progresses in their own way. That advice—and finding a community that truly understands—meant everything during those uncertain days.
Tell us more about your experience getting involved with local advocacy efforts through the California Perinatal Quality Care Collaborative (CPQCC).
I first heard about CPQCC two years ago through a post in the Hope for HIE California Chapter Facebook group. They were looking for Spanish-speaking families, and I decided to get involved. Right away, I noticed that most of their work was focused on families of premature babies. Out of 15 families involved with CPQCC at the time, we were the only ones with a full-term NICU baby and the only Hispanic family.
CPQCC’s goal is to establish Family Advisory Councils (FACs) in every NICU in California to ensure equitable, high-quality, family-centered care. When care is family-centered, babies thrive—but the reality is that having a critically ill baby is incredibly traumatic and stressful. Family-centered care, rooted in trauma-informed care, focuses on supporting both the baby and the family. It’s especially important that this care is culturally sensitive so families can stay focused on their child without feeling isolated or misunderstood.
As part of CPQCC’s FAC, we worked to create ways for families to share their needs directly with the NICU teams. One of our biggest achievements was co-developing a resource bundle called “NICU Families with a Non-English Language of Preference.” This free tool helps healthcare teams better understand and meet the needs of diverse families. It’s such meaningful work because every family deserves to feel seen, supported, and heard, no matter their background or their baby’s medical journey.
What have you gained or learned from this experience?
Since then, I’ve also joined the Interagency Coordinating Council on Early Intervention as a community representative for California. It’s been such an eye-opening experience, not just advocating for my daughter, but also helping other families going through similar challenges learn how to stand up for their children. One of the biggest lessons I’ve learned is to never take “no” for an answer. Whether it’s appealing a rejection or pushing for more support, advocacy is a never-ending process.
I’ve noticed that so many parents get discouraged because it feels like there’s no help or not enough resources. But that’s often because they don’t realize there are options—they just need to know how to navigate the system. Many of our HIE kids receive early intervention quickly, joining a regional center and developing an Individual Family Service Plan (IFSP). If we’re lucky, we get a great service coordinator to guide us. But even with that, it can feel overwhelming and lonely.
What I’ve learned is that a support system goes beyond your immediate family—it’s about the people you meet along the way who truly understand your journey. Finding the right group of people takes time, but when you do, it makes all the difference.
What do you hope families take away from your story to help them on their HIE journey?
The first year really flies by, so my biggest advice is: don’t compare your child to anyone else’s. Just focus on enjoying every single moment, even the tough and challenging ones. It might not feel like it now, but it really does get better!
Don’t get discouraged, and never lose HOPE. Celebrate every single milestone, no matter how big or small—they’ll get there in their own time and in their own way.
Also, get involved! Join your NICU’s Family Advisory Council if they have one, connect with a local family resource center, and look into your state’s developmental services. The support and connections you’ll find along the way can make such a difference.
What is one of your family's favorite holiday traditions?
Before Gianna was born, we loved going to see Christmas light shows—it was one of our favorite traditions. But now, we’ve noticed she doesn’t tolerate them well, so we’ve had to adjust and find new ways to celebrate together.
We usually celebrate on Christmas Eve, which is a mix of traditions from both sides of the family. My husband’s side is Peruvian, and my family is Mexican, so we combine our favorite holiday dishes. They make Peruvian tamales, and we make pozole—it’s the perfect mix! We also try to stick to the tradition of opening presents at midnight, but let’s be honest, with little ones, it doesn’t always go as planned!
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining in and making a difference, whether it’s through donations, volunteering opportunities, or spreading awareness of HIE.
Together, we can create a legacy of hope, compassion, and support that extends far beyond the holidays, leaving a lasting mark on families who need it most.
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