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?
My husband Steve and I adopted our son Jake through the foster care system. He had severe HIE at birth. We connected to Hope for HIE shortly after his placement so we could find a group for support. Learning more about the journey and finding out about resources we would need as our little warrior has grown has been very helpful, and seeing the joyful posts of inch-steps and accomplishments in the community has been very uplifting for us all.
What was your motivation for volunteering?
I am dedicated to helping others traveling this path of HIE diagnosis because I understand from personal experience how challenging it can be to navigate alone, and I believe that having the support of others can make a significant difference.
What are your future hopes or aspirations for Hope for HIE?
I am looking forward to mentoring others in the journey during the upcoming year. I’m excited to have the opportunity to come alongside others just starting out and give them hope and encouragement.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We love spending time with family. We get together with both my and my husband’s family over the holiday season. We are blessed to have the whole family close by, so we are able to get together often.
Hustle for Hope 5K Host
HIE Awareness Month Ambassador
What is your connection to Hope for HIE?
I am from South Africa, but my family lives in Dubai, and my four-year-old son Zack has severe HIE III. For the past three years, I’ve been raising awareness for HIE and making myself available to HIE families here to support them in whichever way I can. I’ve also been an HIE Awareness Month Ambassador for the past two years, and I could not be more proud to internationally represent HOPE FOR HIE, especially because I don’t think I could share our story so confidently if it were not for this organization. It has been such an amazing support and has led us to be able to access so many resources and other HIE families around the world who have now become our close friends.
What was your motivation for volunteering?
This journey has been lonely at times, but I discovered that volunteering as an Ambassador and raising awareness allowed me to connect with HIE families worldwide. This has been a tremendous source of support for me, and it’s fulfilling to share our story to inspire and support others.
What message or piece of advice would you like to share with other families on this journey?
Always hold onto hope, remember that your feelings are valid, understand that you are not alone in this journey, and never hesitate to seek help when needed.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
Definitely our Christmas family photoshoot and staying awake on Christmas Eve with some hot chocolate, a Christmas movie, our Christmas pajamas, and just enjoying alone time with our little warrior.
Birthday Card Committee
What is your connection to Hope for HIE?
We’ve been in the HIE community for almost nine years, and we began our connection in the NICU by joining Hope for HIE’s Facebook group. We love the knowledge base and support Hope for HIE offers families and caregivers.
What was your motivation for volunteering?
It’s a blessing to write birthday cards to our HIE community members. Everyone likes getting “snail mail,” so it’s a special treat to bless HIE kids on their birthday with a personal handwritten letter and to get to learn more about them in the process.
What are some favorite memories or experiences you’ve had within this community?
We are especially grateful for the perspective this community has given us. We read the posts of struggles, and it makes us humble. We read about a child reaching their goal, and it renews our faith in possibilities. We see kids participating despite their own circumstances, and it encourages us to allow our son to do the most he can. We see the highs and lows of HIE, and we know we aren’t alone.
❄️ What are some traditions or activities your family enjoys together during the holiday season? ❄️
We love to pack up the kids in the car, drive through a Bethlehem scene, and spend time looking at beautifully decorated homes.
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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