Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy



December 19th, 2023  | Family Stories  | Give Hope  | News


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.


Peer Support Mentor

What is your connection to Hope for HIE?
Our little family of four lives a nature-filled life in a yurt surrounded by towering pine trees. This beautiful life is our plan B after our son’s HIE injury waylaid our original life trajectory eight years ago. We found Hope for HIE somewhere along the way in our first year after injury. This network has been a gift; a place to return to when no one else in the world seemed to understand our struggles, our joys, our worries, and our dreams.

What was your motivation for volunteering?
I volunteer as a Peer Mentor because I wholeheartedly believe in the power of community support and validation, especially when it comes from someone who has walked a road similar to your own. I also believe that by creating meaning and purpose from the journey of our child’s injury, we foster deep healing through true acceptance of our story. Helping other people through those first darkest days creates purpose behind my own struggles and honestly feels like something I was meant to do.

What are your future hopes or aspirations for Hope for HIE?
I hope that Hope for HIE continues to be a safe place for self-expression — an area where we can focus on what unites us instead of our differences — and has opportunities to expand the breadth of support options offered. I also hope that Hope schedules even more in-person events and works to create equipment exchange libraries to allow community members to support each other by passing items on. For our family, I hope for continued good health and to have some epic accessible adventures in the near future!

❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We are a fairly non-traditional family, so our holidays always seem to look different. This year, we’re looking forward to checking out an ice-skating rink and getting our new off-road wheelchair out into the snow!


Peer Support Mentor

What is your connection to Hope for HIE?
I am connected by my own daughter, who suffered HIE at birth. I love Hope for HIE. They are a staple in resources and support for my family and for many others. Without them, I definitely would have felt lost in the HIE journey.

What was your motivation for volunteering?
My motivation is purely humanitarian. I want to ensure that I am there for anyone who needs it. As an empath, I want to ensure parents of newly diagnosed children feel supported at the beginning of their journey and as they sit in the unknown.

What message or piece of advice would you like to share with other families on this journey?
As a parent, it’s crucial to advocate for your children; speaking as a black parent, I urge advocacy even more strongly. I also know how important it is to take time for yourself in any way possible, even if it’s spending five minutes in the bathroom or going to the store alone. Take time for yourself when you can. Remember, the journey is not planned, and you are just along for the ride. Enjoy time with your child as best you can, as life is so precious.

❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We enjoy the holiday season. We decorate the tree and have big festival dinners all together with family and friends. We enjoy the relaxation that comes with taking time off work and emails.

Ways to Make an Impact

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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