In the world of Hope for HIE, there’s an incredible community of families who not only navigate the challenges of this journey, but also extend their support, connection, gifts, and stories to uplift others.
Each has a remarkable story to share about their “why” — volunteering their time and hearts to Hope for HIE, making a positive impact on countless lives.
Hustle for Hope 5K Host
What is your connection to Hope for HIE?
Our son, Hunter, came into this world a little early and had some complications during delivery. He experienced what we now understand were seizures at birth and received his official HIE diagnosis five days into his NICU stay. We had so many questions, and that is when our specialist gave us a Hope for HIE pamphlet. This is where our journey started with trying to understand how, why, and what we could do to be an advocate for our son.
What was your motivation for volunteering?
I found being able to bring together families in our area helped me heal. Hearing other families’ stories has helped me understand that I am not alone in my fears and that spreading awareness has the power to close the gap in education when it comes to knowing and understanding HIE and its many impacts.
What are your future hopes or aspirations for Hope for HIE?
I hope that Hope for HIE can play a role in increasing understanding and knowledge among healthcare professionals in smaller communities. This includes fostering a deeper understanding of topics like neuroplasticity and the significance of early intervention.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
Getting our Christmas tree and hauling it out with one of our horses has been a staple in my family. We also love reading The Night Before Christmas on Christmas Eve and opening up one gift before morning comes.
Hustle for Hope 5K Host
What is your connection to Hope for HIE?
When our first child, Olivia, was born and diagnosed with HIE in the NICU four years ago, it felt like parenthood devastation. It was lonely and frightening. When I started opening up about our journey, an old coworker of mine mentioned Hope for HIE as a support group. I got connected to the online support group and immediately felt seen and loved. This group has been able to provide our family with so many helpful resources and has also served as a place for me to just vent to those who get it.
What was your motivation for volunteering?
My daughter motivates me to advocate for her. As a Hustle for Hope 5K host, I am able to spread awareness of HIE and help connect people to Hope for HIE’s resources and support so they feel less alone. My hope is that collective volunteering efforts – no matter how big or small – can, in time, result in more research and preventative treatment options for HIE.
What message or piece of advice would you like to share with other families on this journey?
Whenever you are ready, we are here. Whether that is for recommendations, motivational stories, or just to vent about the HIE struggles. Hope for HIE is truly a space without pressure or judgment.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
Each year, we love to go to a tree farm to pick out a Christmas tree. We take lots of pictures because a long life is not promised, and I like to snapshot all the memories.
New to HIE Peer Mentor
What is your connection to Hope for HIE?
My husband, Eric, and I have one daughter, Kyla, who is ten years old. We live in Indiana, just outside of Chicago. I found hope for HIE when Kyla was just out of the NICU and have been in the groups since!
What was your motivation for volunteering?
When Kyla was small, Hope for HIE was just a fairly small Facebook community of parents. I joined when she was just out of the NICU and had to find it on my own through tons of searching. Even though Kyla spent almost six weeks in the NICU, no one ever told us that what happened to her was called HIE. It wasn’t until we requested her medical records that we saw the term. Before joining the groups, we felt totally isolated and alone. I want to help families to not feel alone! All of our journeys will be so different, but I want them to know that someone understands at least a bit of what they are going through and is here to listen.
What are some favorite memories or experiences you’ve had within this community?
My favorite moments are always meeting or talking with other parents who have had some of the same feelings or experiences that we have had. So often, people in our everyday lives don’t really get what we’re going through, especially in the early days. Connecting with parents on a similar journey and having someone who gets it is really something special.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
Kyla loves Christmas and her Elf on the Shelf, Happy, coming to visit! Over the holiday season, she gets to spend more time with her older cousins and our family. We love to play games and just spend time together over her holiday break!
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining Chancey, Tina, and Lynn in 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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