We’re constantly inspired by incredible families, like the Niblett Family, who have turned their experience with HIE into a powerful force for advocacy and support.
Not only have Romm and his family become deeply involved in the research and advocacy space in Australia, but Romm also serves as a peer support mentor, offering guidance, connection, and support to other families. Their story embodies what Hope for HIE stands for—how the strength of community and the act of giving back can help assure other HIE families that they are not walking this path alone.
Romm, Rhiannon, Bodhi, and Asher
Can you share a bit about your connection to Hope for HIE?
Our son was born in December 2012 after a severe HIE event, which has resulted in many complex challenges that he continues to face. After months of feeling uncertain and overwhelmed, I turned to Google to search for allyship, support, and connection, and that’s when I found Hope for HIE.
Can you share your experience of getting involved with advocacy and research?
My journey into advocacy was accidental. After creating a Facebook page and experiencing the support and love from others, I realized we needed a village around us. As people began reaching out, sharing how our story had helped them, it became clear there was little to no support in Australia, where we live. Connecting with HOPE for HIE solidified our desire to do more in this space.
How did becoming a peer support mentor fit into your advocacy journey?
As people reached out to us, I saw the impact of sharing our journey and how much it meant to others. This inspired me to become a peer support mentor, as it was a natural extension of building connections and supporting families facing similar challenges.
What motivated you to work with research and scientific organizations like Argenica?
We were drawn to research because we needed advocacy, support, and hope for a cure or prevention. Argenica is a biopharmaceutical company focused on developing neuroprotective therapies, which resonated deeply with us as an HIE family. Their work aims to reduce brain damage caused by conditions like HIE, giving families hope for better outcomes. Our vocal stance in the HIE community led them to reach out, and we were eager to help—knowing that even small contributions to their research could benefit future families facing similar challenges.
How do you feel like this work has impacted you and your family?
It’s incredibly fulfilling to be part of this work. Locally, I’m excited about creating a stronger support network for families in Australia. Globally, I look forward to contributing to a broader community and advancing research that could change lives. This work has shown me the power of connection and the importance of being open about our experiences. It’s not just about helping others—it’s also about creating hope for a better future.
What do you hope families take away from your story to support their own journey with HIE?
Helping others will help you heal. Together, we are stronger and better equipped to support current and future children. And remember, you are stronger than you think you are. It’s a new existence, being a parent like we are—but at its core, it’s still being a parent.
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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