The Jarett Family beautifully illustrates how connection and support can lead to meaningful moments that honor every unique HIE journey.
At their wedding, Amelia’s aunt and uncle chose to forgo traditional wedding favors and instead made a donation to Hope for HIE in Amelia’s honor, with Amelia serving as the flower girl. To further raise awareness, a framed display with a QR code was placed at the event, allowing guests to learn more about HIE and the family’s story.
Moments like these are a beautiful reminder of the power of family, connection, and the hope that brings us all together.
Shannon, Jason, and Amelia
Can you share a bit about Amelia and your connection to Hope for HIE?
Amelia was born full-term. I was induced due to high blood pressure, but when she was delivered, everything seemed fine, and we were moved to postpartum without any concerns. My husband was actually the first to notice her hand twitching, but we were told not to worry. It wasn’t until our night nurse saw the movement that she pointed out it was abnormal.
Amelia was taken to the NICU, where they started her on strong anti-seizure medications to help manage her seizures, which had spread to her leg and arm and even caused tongue thrusting. After some tests, Amelia was diagnosed with mild to moderate HIE, and her MRI showed several areas that were impacted.
The hardest part for us was the “wait and see.” As first-time parents, we had no idea what HIE was, and we felt completely lost. Amelia started OT and PT at just two months old, and she still continues with speech and PT through our town’s programs.
While we were still in the NICU, I started researching HIE and came across the Hope for HIE website. I reached out, and Betsy responded right away, suggesting I join the Hope for HIE Facebook group. That group has been a lifeline—helping me better understand the injury and giving me the support I desperately needed from other parents who truly “got it.”
Now that Amelia is 3, I’ve been able to provide support to other parents who are just starting their HIE journey. Amelia continues to meet her milestones in her own time, and we couldn’t be more proud of her.
Since 2022, we’ve been part of the Hustle for Hope. For the first two years, I organized a local 5K walk/run in our town, where friends and family came together to donate and show their support. This past year, I joined the Rhode Island event, and it was amazing to connect with other families who’ve been through similar experiences.
At their wedding, your brother and sister-in-law chose to make a donation to Hope for HIE in Amelia’s name instead of offering traditional wedding favors. They also displayed a QR code at the reception so guests could learn more about Hope for HIE. How did the idea of using a QR code to share information about HIE come about, and how did the guests respond when they saw it?
It was such a total surprise to Jason and me. My sister and brother-in-law wanted to keep it a secret, and luckily, they showed me the frame before I got my makeup done. It meant so much to us—they’ve been with us from the very beginning of this journey, always offering their support. My brother-in-law is also Amelia’s godfather. They wanted to honor Amelia and give people a chance to learn more about HIE.
Guests were able to see the frame before Amelia walked down the aisle, which made it even more special. I was pretty busy running after a toddler all night, but I did manage to connect with a few people, and I really hope that everyone walked away with a little more knowledge about HIE.
What message do you hope people take away from this gesture and the awareness raised at the wedding?
I hope it shows just how much it means to have such a caring and supportive family—choosing to honor Amelia on their special day was so touching. Seeing the reaction to the post on our HIE Facebook page was incredibly inspiring, too.
Our family and many of the wedding guests have seen Amelia grow stronger in her own way and watched her personality shine through. For those who didn’t know Amelia or her story, this was a chance to learn about the impact of HIE. Who knows—maybe just hearing the word ‘HIE’ and becoming more aware will help someone at the wedding pass that knowledge along to someone else who might face a similar situation in the future.
What’s one thing you wish more people knew about HIE and the importance of support for families?
I wish more people understood that there’s no one-size-fits-all approach with HIE and just how hard the waiting game can be. The brain is so complex, and so much feels uncertain. I also hope people realize how crucial early intervention services are and the difference they can make when started early. If it hadn’t been for our amazing postpartum nurse, we might not have caught the seizures, especially as first-time parents.
We truly wouldn’t be where we are without the incredible support of our family. From the very beginning, we were so fortunate to have financial help from both immediate and extended family, which allowed us to stay right next to the hospital so one of us could always be with Amelia in the NICU. Jason’s mom drove over four hours just to be there for us. My mom stayed at the hotel, letting me cry and release all the emotions I’d been holding in, and she also took care of our dog while we were away.
Once we were home, our parents, siblings, and extended family checked in constantly and stepped in to give us breaks when we needed them. For the first two months, Jason or I were always up with Amelia to make sure we didn’t miss any seizures. I still remember the look of shock on the resident’s face when I told her that one of us stayed awake, even when Amelia was sleeping.
The toll it took was immense, but I honestly don’t know what we would have done without the love and support of our family and friends. They carried us through those early, overwhelming days.
As the holiday season approaches, do you have any favorite activities or family traditions you’d like to share?
Every year since Amelia was born, we’ve bought matching pajamas for family photos—it’s one of my favorite traditions. I still have my childhood stocking with a bear and my name on it, so right after we were discharged from the NICU, I ordered a similar one for Amelia.
I come from a big extended family, and the holidays have always been such a special time filled with traditions like our fun Yankee Swap. Jason and I have carried on the same holiday traditions we grew up with, and we feel so lucky that Amelia gets to experience the magic of Christmas with both sides of our family. It’s so special watching her make memories with her cousins, just like I did with mine. Now, my cousins have kids of their own, and Amelia gets to celebrate with them, too, along with my siblings’ children, who are close in age.
Last year, we started Elf on the Shelf with our elf, Shelley, which has been such a fun addition! Amelia loves waking up each morning to see where Shelley has traveled overnight.
As she gets older, I’d also love to start a new tradition of volunteering together during the holidays—something that allows us to give back and pay it forward.
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining in and 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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