Today’s story in Give It All You’ve Got comes from Adam.
Hollie’s quote, “You get 3 choices in life: give up, give in, or give it all you’ve got”, inspired this series. Adam was diagnosed with HH at nine, after developing precocious puberty and symptoms of Pallister-Hall Syndrome, a genetic condition his father lives with too. Pallister-Hall Syndrome is one of the known genetic causes of HH, and only a small percentage of our community carries this diagnosis alongside it, which makes Adam’s story a rare and important one for those families to see reflected. In his teens and twenties, different seizure types emerged and eventually made learning and functioning difficult. He had a partial craniotomy to remove much of the HH. After years of recovery, he’s returned to general functioning, but still has some challenges. In recent years, he’s focused on mental health and its role in both epileptic and non-epileptic seizures. He enjoys spending time with his family, helping at church and a local library, and learning new things.
What “giving it all you’ve got” looks like — including when progress is slow
“Daily life means maintaining stability while staying flexible around fatigue or auras. I cook and clean, but I pace myself. Cooking takes planning. I might make one part by hand and use frozen sides for the rest. Even that can tire me out. Varying activities helps me keep going.
Recovery took longer than expected, and medicine still causes fatigue. Even with fewer seizures, I struggled to adjust to daily life. My brain and body had lived in survival mode for too long. A new normal felt unfamiliar.
I had been out of traditional work for years. I didn’t believe anyone would hire me. I found small wins through volunteering at a hospital and working as a library page. Later, I taught English online and wrote for businesses. Neither was consistent work or paid well though.
Transportation remains a challenge. I can drive without problems for a while, but then an issue can arise that makes driving uncertain. Even when I’m eligible to drive, I don’t always trust myself and stick to short, straight distances on main roads.”
What HH tried to take from him — and what he found on the jiu-jitsu mat
“After years of living with HH and recovering from surgery, I started seeing only what I couldn’t do. But this year, I joined a friend’s jiu-jitsu class. My brain and body weren’t prepared to be folded in so many ways.
I became more aware of where my body was in space. That was new.
HH can affect visual perception, which can make it hard to know where my body is in space. Sometimes I have to ask where the other guy’s hips are or where my legs are, or how and where to move my hands and arms. Then I have to muster the courage to spin or fall without knowing exactly where I am in space.
A hand on my arm. A hand on my hip. Still embarrassing to need that.
Still, my doctors encouraged me to continue because the training is building my perception, strength, and reflexes. I have three stripes on my white belt. I joke that it means I’m dumb enough to keep showing up twice a week to get rolled and folded.”
What it means to contribute after everything
“Contributing means spending time on what I care about. Finding things to focus on besides my health, like cooking a memorable meal or going on a walk with the dog, keeps me from getting stuck. For so long, my mind and body stayed on alert. Counseling helped me calm my nervous system and build strength. Still, moving from doing very little to doing more was hard.
Being with my family is important. They are patient when I’ve had a rough night or feel overwhelmed. My dad has HH too and knows some of the struggles.
One holiday season, I worked the register at a large electronics store. The multiple steps were daunting. My supervisor understood my brain issues, wrote procedures on notecards, and had someone available to answer questions during my first week.
The pace was fast, but I kept up for five hours several days a week. I had one episode, recognized it, and stepped aside. At the end of the holiday season, my supervisor said that if I could handle Black Friday, I could do anything. That gave me confidence I hadn’t totally lost.”
What he’d say to someone newly diagnosed, feeling alone, or navigating HH without family support
“Living with HH is challenging. But it is only part of you, not all of you. Find people who support you as a person, not a patient.
Join the official HH forum or Facebook page. Asking questions and sharing symptoms and experiences can help you see that you’re not alone.
Get involved in your community, even if getting there takes planning. Volunteering gets me out in the community, where I can meet people and find ways to help.
Adapting to a world that doesn’t know HH takes extra steps. Transportation has to be planned in advance. Asking for rides can be embarrassing, but friends can help. I often arrange paratransit for medical appointments, errands, or volunteering.
Build a support plan of people you do know, perhaps from church or your neighborhood. Find a medical team that listens. Advocate for yourself and get a case manager, if available.
You are able to do more than you think. Starting can be the hardest part. Your life may not match someone else’s pace, but it is still valuable.”
Thank you, Adam, for showing this community what it looks like to keep showing up – on the mat, behind the register, and in every small win along the way. And thank you for sharing a story that so few in our community get to see reflected back to them – Pallister-Hall Syndrome, present across two generations of your own family. Thank you, too, for your contribution to the Adults with HH Path breakout session at our 2026 Patient and Family Conference. This is why we fight.
Inspired by Adam’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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