Today’s story in Give It All You’ve Got comes from Sarah.
Hollie’s quote, “You get 3 choices in life: give up, give in, or give it all you’ve got”, inspired this series. Sarah was diagnosed with HH at the age of 1½ and had surgery in 2021 to dissect the HH. Although not seizure-free, Sarah feels the amount and intensity of her seizures has decreased. She lives with complex partial and absence seizures, and finds joy in gardening, time with family and friends, and supporting her local soccer team.
What “giving it all you’ve got” looks like for Sarah since her 2021 surgery
“HH takes a lot of energy and it takes all I have to get up every day, take my meds, go to work and my many doctor appointments. After the surgery in 2021, I am a bit more stable in my seizure activity. With diet, a predictable sleep schedule and less stress, I have fewer seizures and am able to participate in more activities on my own.”
What she’s achieved despite HH — and what brings her joy
“I am proud of the fact that despite my HH, I was able to finish my high school degree, move out into my own apartment, and travel alone on public transportation. Something that brings me real joy is sitting on my balcony, observing all the flowers and plants that I care for all year long.”
What she’d tell someone newly diagnosed — and what she wishes she’d known sooner
“I would say to that person, that it is not the end of the world. It can be managed with medicine, faith, support from family and good doctors, and a strong support system like Hope for HH. Connection with others that have HH are life changing. And most importantly, don’t underestimate your gut feeling. If something doesn’t feel right, ask questions and inform yourself.
In the beginning, I wish I would have known more people that had what I had. HH is not just seizures. There are so many other parts of our lives that are disrupted and need attention, we have to have the courage to ask for help and inform ourselves. As the old German saying goes, ‘A problem shared is a problem halved.'”
Thank you, Sarah, for the reminder that this journey isn’t only measured by seizure counts — and for showing this community what it looks like to build a full life alongside HH, one balcony flower at a time. Thank you, too, for your contribution to the Adults with HH Path breakout session at our 2026 Patient and Family Conference. The old German saying she shared, “A problem shared is a problem halved”, is, in many ways, the same conviction that built this organization 17 years ago: no family should have to carry HH Syndrome alone. This is why we fight.
Inspired by Sarah’s story? Join the fight for every HH Syndrome warrior. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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