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.
Newly Diagnosed Care Committee
What is your connection to Hope for HIE?
My now 2-year-old son was diagnosed with HIE about four days after birth. He has injuries in his parietal and occipital lobes, including the white matter. Since joining the Hope for HIE community, I feel more hope and even joy when we are faced with challenges or new diagnoses because I know that there is a community behind us.
What was your motivation for volunteering?
The time period when we received my son’s initial diagnosis was the darkest time of my life. I had no resources and felt hopeless and so alone, which is why it’s so important for me to do what I can to support others on this journey. I don’t want anyone else to feel the extreme darkness by themselves like I originally experienced, and giving back allows me to spread some hope and love to others to help see them through their hard times.
What are your future hopes or aspirations for Hope for HIE?
I hope that Hope for HIE resources will be accessible in all NICUs, as we had no support when we received our son’s diagnosis. Even just mentioning Hope for HIE can provide hope and knowledge that no family is alone.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We love to pick out our own real tree the day after Thanksgiving and spend as much time as we can with our family!
Newly Diagnosed Care Committee
What is your connection to Hope for HIE?
My youngest, George, was born on September 9th, 2020, and experienced moderate HIE at birth. Discovering Hope for HIE not only raised our awareness but also filled my heart with boundless strength, thanks to the unwavering support of fellow moms in this community, many of whom I hold dearly in my heart, despite never even meeting face-to-face.
What was your motivation for volunteering?
THE PARENTS! I felt so very lost and alone when this happened. I longed for another mama to talk to. This is why, in addition to writing support cards to newly diagnosed families, I was able to get the HIElights for Hope anthology into our local NICU!
What message or piece of advice would you like to share with other families on this journey?
You know exactly what your baby needs. Listen to your heart. Trust yourself. Talk about your trauma with a trusted source so that you can begin to move through it safely.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We LOVE making my husband’s Aunt Mary’s Christmas cookies! They’re beyond yummy.
New to HIE Peer Mentor
Newly Diagnosed Care Committee
Hope by the Beach Mom Retreat Planning Member
What is your connection to Hope for HIE?
Our son, Rob, is six years old. He was diagnosed with HIE at birth due to unknown causes. The Hope for HIE community has been a pivotal part of my family’s journey since the NICU. Being able to ask a group of nine thousand people for lived experiences and emotional support for challenges that people in my direct support system just can not understand has been critical in my parenting journey.
What was your motivation for volunteering?
Parents in the HFH community who came before me have been my biggest resource of support since beginning this journey. Being able to connect with people who have lived your experiences is such a valuable and special resource. This is why I love being able to provide support to parents just beginning their journey: having someone by your side who “gets it” makes it feel less lonely.
What are some favorite memories or experiences you’ve had within this community?
The Hope for HIE mom retreats are always some of my favorite memories. Connecting with moms from all over with no other responsibilities is an unforgettable experience. From hanging by the pool to unexpectedly leading the yoga on the beach class, this year’s trip helped refill my cup.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
Our local zoo does a Christmas light display. We love going to walk through there and let Rob take it all in.
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining Lindsey, Lauren, and Allison 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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