Today’s story in Give It All You’ve Got comes from Natalie and Alex..
Hollie’s quote, “You get 3 choices in life: give up, give in, or give it all you’ve got”, inspired this series. Natalie and Alex are parents of a three-year-old daughter who was diagnosed with a 2cm HH at 9 months old. Gelastic seizures and precocious puberty led to her diagnosis in March 2024. In September 2024, she underwent MR-LiTT surgery and has remained seizure free ever since — though she continues medication to suppress her precocious puberty.
What “giving it all you’ve got” looks like as parents
“When you love someone, you’re willing to give everything you have. Early on, we refused to take ‘no’ for an answer or settle for specialists who did not have the experience our daughter deserved. We quickly learned to do our own research and bring ideas directly to our doctors, a habit we still practice regularly today. That insight doesn’t just come from medical journals; connecting with other HH survivors and caregivers to learn what worked for them has been just as important.
They say you know your own body best, but the same goes for your child. If they can’t fully speak for themselves, you have to be their voice. We will always stand alongside our daughter, fiercely committed to finding the answers, care, and support that fit her best.”
Watching their daughter give everything she has — and going from an online search to helping plan a conference
“Our daughter gives it her all every single day, especially when doctors’ appointments pull her away from the everyday fun a three-year-old would typically be having. While this is all she’s ever known, we still find ourselves aching over how unfair it is for her. Yet her resiliency and grace in these moments teaches us how to be strong for her, and fills us with immense pride.
Through Hope for HH, we discovered that strength is a shared trait among so many survivors and caregivers. The value of the resources, knowledge, and connection they’ve provided is truly immeasurable. Once we found our footing on this journey, we knew we wanted to pay it forward and support other families just as we were supported.”
What they’d tell a parent just starting out — and what they want their daughter to know
“Navigating the vast range of HH symptoms and treatments felt overwhelming, but we found immense comfort in knowing we weren’t the first to walk this path. We rely on Hope for HH for patient stories, real-world experiences, and a network of dedicated doctors and surgeons who pour their hearts into finding better treatments.
As a parent, you can do this, but you don’t have to do it alone. Everyone faces hardships in life, but having a community makes those burdens so much lighter. To families just starting out: reach out. Connect with people who understand the hard days and share your experience.
We want our daughter to know that she is exactly who we wanted her to be, and that her diagnosis does not define her. Community support lifted us up when we needed it most, and knowing that same community will be there when she needs it means everything to us.
Hope for HH is here for both survivors and the family members who love them. We witnessed that love and outpouring of support at the 2026 Patient and Family Conference, and we hope to support more Hope for HH opportunities in the future so we can all continue to learn and grow together.”
Thank you, Natalie and Alex, for turning what you found in your hardest weeks into something you’re now building for others. This is why we fight.
Inspired by their story? Join the fight for every Hope for HH family. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
Want to make a difference? Join our Team.
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.
