Hope for HIE is built by an incredible community of families who face the challenges of this journey with strength, resilience, and compassion. What’s even more inspiring is how they go beyond their own experiences to lift others up—sharing their support, connections, gifts, and stories to create a network of hope and understanding.
Every family has a powerful “why” behind their involvement. Whether it’s volunteering their time, sharing their story, or working to bring the community together, their dedication makes a lasting impact, helping countless families feel seen, supported, and less alone on this path.
Peer Support Mentor
Tell us about your family and your connection to Hope for HIE.
Our daughter, Kyla, was born in 2013, and we joined Hope for HIE when she was just 2 months old, fresh out of the NICU! I connected with other parents right away and even went to my first Mom’s retreat when Kyla was only 7 months old. Hope for HIE has been such a big part of our lives ever since!
What is your motivation for volunteering as a peer support mentor?
When Kyla was little, Hope for HIE was much smaller and more of an informal group. Now that it’s grown into a full organization, I wanted to help contribute to that growth! Becoming a Peer Mentor felt like the perfect way to make a real difference by supporting parents whose children are newly diagnosed. This program would have been a game-changer for us when Kyla was small, so as soon as it launched, I knew I wanted to be part of getting it off the ground!
How has being part of the Hope for HIE community impacted your family’s journey?
Being part of Hope for HIE has shaped every part of my journey since we joined when Kyla was a baby. Over the years, I’ve turned to this community for support and advice on so many aspects of our lives—it’s always the first place I go for answers or to search through past posts. Having access to years of shared knowledge and experiences is such a huge resource for parents like us. On top of that, I’ve made friendships here that mean the world to me—friends who truly understand what our life is like and the challenges we face.
What are some traditions or activities your family enjoys together during the holiday season?
We love the holiday season and all our traditions! Kyla’s favorite is her Elf on the Shelf, Happy, who visits every year—she always looks forward to seeing where Happy shows up! Kyla also has two cousins (now 20 and 18) who are a big part of our celebrations. They help us bake, get ready for Christmas, and spend time playing games together. Kyla is obsessed with Uno right now, so it’s become a family favorite!
Hustle for Hope 5K Peloton Host
In loving memory of Melanie Brooke Hicks
Tell us about your family and your connection to Hope for HIE.
Our late daughter Melanie, the absolute light of our lives, faced severe HIE along with a host of cascading diagnoses that followed. Her journey with HIE wasn’t immediately clear—those three letters entered our lives at three months old, forever changing everything. In that moment of uncertainty, I was desperate to find information, support, and families who understood. That’s when I found Hope for HIE.
What was your motivation for hosting our first official Peloton Hustle for Hope 5K?
Since 2021, I’ve hosted virtual Hustle for Hope group runs and rides with my Peloton community, and in 2024, we became an “official” online event. Our theme is always the same—Tie Dye 5K for Melanie—because she was our little hippie, and we invite everyone to wear as much tie dye as possible. The first two events were held in her honor; the last two, and those to come, are and will be in her memory. Though she was with us for only 23 months, I will carry her legacy for as long as I can 🌈.
What are some of your favorite memories or experiences with this involvement at Hope?
Seeing my community come together virtually—“hands on my back,” as we say—year after year, in support of Melly, me, and all HIE families has been nothing short of overwhelming. What started as a small, unofficial group of online friends from around the world has grown into something so much bigger. Last year, it even attracted Peloton coaches, who participated and recorded a live warmup for our group before the run and ride! This experience has allowed me to connect with people I never would have otherwise, introducing them to HIE and spreading awareness of a diagnosis most people have never heard of.
What are your hopes and aspirations for the Hope for HIE community and your family as you look toward the future?
I truly hope to one day support other loss parents. While I’m still working through my own grief, I believe I could be a steady source of support for others in the future. When the time comes, I know Hope for HIE will be there, offering opportunities to help me pass forward the strength, compassion, and connection I’ve gained through this journey.
Peer Support Mentor
Tell us about your family and your connection to Hope for HIE.
I am a proud grandmother to a beautiful, smart, fun, and compassionate 10-year-old granddaughter who lives with HIE. She inspires me every day with her strength, resilience, and the joy she brings to everyone around her.
What is your motivation for volunteering as a peer support mentor?
Betsy and the Hope for HIE organization have made such a meaningful and positive impact on my daughter-in-law and her journey. Seeing how much this community has supported her inspired me to get involved and give back. I wanted to be a part of this incredible mission by making a positive difference for other grandparents who are navigating life with HIE in their families. Providing support, understanding, and connection to other grandparents has been a way for me to not only honor my family but also help others feel less alone in their journey.
Share some of your favorite memories or experiences from your involvement with Hope.
I truly enjoy connecting with other grandparents who are experiencing the same worries and challenges we all share. There’s something so comforting about being able to relate to one another’s journeys. I treasure hearing the love and hope in their voices as they talk about their grandchildren and families—it’s a reminder of the strength and resilience we all carry in our hearts.
What are some traditions or activities your family enjoys together during the holiday season?
My sweet Isabel likes nothing more than everyone being together. Her wish comes true during the holiday season. Isabel, her mom and dad, Nana, and her dogs will travel from Ontario to Kentucky for Christmas. She will be smothered with love and hugs!
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining 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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