Today marks the start of a new series: Give It All You’ve Got. All September, we’ll be sharing the voices of adults living with HH Syndrome, parents, caregivers, family members, and the clinicians who show up for this community — each answering what it means to give everything they’ve got.
The series is inspired by one person’s words: Hollie Massey. It felt right that her story opens it.
Hollie is an adult living with HH Syndrome from Ireland. Diagnosed at 13, she had laser ablation surgery in Texas in 2019 and has been seizure free ever since. This July, she joined us at our 2026 Patient and Family Conference in Chapel Hill, NC, as a panelist for our Adults with HH breakout sessions.
Where the quote came from — and what it looked like then vs. now
“On the day I received my HH diagnosis, this quote ‘You get 3 choices in life: you can give up, give in, or give it all you’ve got’ was written on the wall.
When I first shared my story, in 2022, ‘Giving it all you’ve got’, looked like juggling the medical world, appointments, and fighting to be heard, with trying to adapt my life to the new ‘normal’.
Whereas today, this looks like fighting to live my life to the fullest, navigating adulthood and independence, despite the complications of surgery.”
What HH Syndrome tried to take from her
“I am so grateful to have been able to get my Driving License, which is something I thought HH was always going to stand in the way of. It has been challenging in adapting how I learn around my memory difficulties, but I am grateful to be going into my 4th year of University, studying Fine Art.
I would say to the younger version of myself, ‘it isn’t going to be easy, and it will take patience, hard work, and you will have to take the “scenic route.” However, in spite of HH it is still possible to reach your goals and experience things, you thought you’d never get the opportunity to.’
I would also say to myself, ‘what you thought your future would look like before you received your HH diagnosis, compared to your future will become, are very different, but that doesn’t have to be a bad thing.'”
What she’d say to someone just diagnosed — and to someone who’s been carrying this alone for years
“For someone who has just been diagnosed and feels like there is no way forward, I would say: please don’t let the HH diagnosis convince you that you can’t live your life to the fullest. I know how overwhelming it can feel at the beginning, and there will probably be moments when you question what your future is going to look like, but the diagnosis is not the end of the story. You will have to adapt around the complexities of HH and may have to do things differently that take more planning or patience, but there can still be so many things to look forward to, achieve and experience.
To someone who has been living with HH for years and feels alone, I would say, you are not the only one who feels this way, even if a lot of the time it feels like you are! Finding a community can take time, but there are people out there who have a full understanding of the uncertainty, frustrations and challenges that come with living with HH. Having been to the recent Patient and Family conference, has highlighted how sometimes simply meeting someone else who completely understands what you’re going through can make a huge difference. Lastly, I would say, don’t be afraid to reach out, ask questions and connect with others.”
Looking back at the whole journey
“Looking back at my own journey: through diagnosis, surgery, returning to school, learning to drive, and going to university — I think the biggest thing I wish someone had told me at the beginning is that ‘I didn’t need to have everything figured out straight away.’ When I was first diagnosed, and even now, I spent a lot of time wondering what I would and wouldn’t be able to do, when really, I needed to give myself the opportunity to find out. Throughout these past 8 years, since my HH diagnosis, have shown me that sometimes you have to find your own way of doing things rather than assuming you can’t do them at all.”
To “giving it all you’ve got!”
Thank you, Hollie, for your courage and your honesty — and for the words that are carrying this entire community through September. This is why we fight.
Inspired by Hollie’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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