Today’s story in Give It All You’ve Got comes from Erica Webster, cofounder of Hope for HH, and mother of Grace, whose family’s journey embodies the “give it all you’ve got, never give up” spirit at the heart of this September’s theme.
This September, warriors, parents, siblings, and clinicians have shared their stories with courage and honesty and in doing so, have inspired hope in the hearts of this community. Thank you to each of them.
Grace was born on December 24, 2003 – Christmas Eve; the family brought her home on Christmas Day. She was diagnosed with a hypothalamic hamartoma at fourteen months old, after a diagnosis of precocious puberty. At the time, HH Syndrome wasn’t yet recognized, and surgery was the only option offered. Grace passed away in December 2011 from suspected SUDEP (Sudden Unexpected Death in Epilepsy). Her legacy lives on through the tireless work Erica continues to do with Hope for Hypothalamic Hamartomas – made possible by the unwavering support of her husband, Perry, and Grace’s siblings, Sarah and Garrett.
Erica holds a degree in Mechanical Engineering and brings 30 years of experience as a Project Manager and Business Analyst in the technology sector. A Co-Founder of Hope for HH and its current President, she also serves as the organization’s Director of Information and Operations, channeling her expertise and personal journey into meaningful advocacy for families affected by HH Syndrome, connecting with them wherever they are in the world, and wherever they are on their journey with HH Syndrome.
In her own words:
The early years — before there was a name for what Grace had
Grace was fourteen months old when we found blood in her diaper and rushed her to the pediatrician – an ultrasound, then an MRI, then a bone age test and general endocrine testing, all of it leading to the diagnosis: a hypothalamic hamartoma. HH Syndrome wasn’t recognized yet, not the way it is now. There was no roadmap, no website, no resources – just one option on the table: surgery, and the hope that it might stop her seizures. No one was talking yet about everything else this syndrome brings with it. Seizure freedom was the whole goal; everything else was ours to figure out on our own.
In April 2007, Grace had transcallosal surgery at Barrow Neurological Institute (BNI). It wasn’t the outcome we’d hoped for. Immediately following, she developed life-threatening diabetes insipidus that never stabilized, requiring daily fluid monitoring and medication adjustments for the rest of her life, followed by excessive hunger and rapid weight gain.
It was more than a brain tumor. More than seizures. So much more – and almost no one we met along the way understood that. Every new doctor, every new teacher, every new specialist, we became the ones teaching them, not the other way around. We weren’t just Grace’s advocates. We became the experts in HH Syndrome, because we had to be. There was no one else to hand that job to.
Who Grace was
Through it all, Grace was still Grace. She made bling bracelets every single day, loved the calm of beading them and the colors she got to pick. She searched our driveway for the perfect smooth rock to gift, and wanted the biggest flower tucked into her hair, right then, no matter where we were. She found happiness in the smallest, simplest parts of her day and she gave us so much joy in the middle of everything HH Syndrome put her through.
In the early hours of December 11, 2011, Grace passed away from suspected SUDEP. She was seven years old, two weeks shy of her eighth birthday. Perry and I were holding her hand. We told her she didn’t need to fight anymore. We told her we’d be okay. We told her to go.
I know she fought those final hours not for herself, but for us.
How she kept going
People have asked me over the years how I kept going. How I built something in the middle of grief. How I show up for this community every single day, and keep fighting for answers that came too late for Grace.
The honest answer is that I didn’t have a choice, not in the way people mean when they say that. I had a choice. I made it. Every year I make it again.
Grace taught me how.
She found happiness in the simple routine of her day. She wanted nothing more than to be at home with the people she loved. She didn’t wait for her life to get easier before she decided to live it. She lived it, fully, joyfully, stubbornly, in the middle of everything HH Syndrome threw at her. She gave it everything she had, every single day, with a smile that started in her eyes.
Looking back, she was patient 101 for BNI. They were still learning as they went – about HH resections, and about everything that can go wrong afterward. We were, and still are, extremely grateful to her surgeon and the nurses who cared for her, they were truly doing the best they could with the knowledge that existed at the time about this very rare brain lesion. To this day, we are so very thankful for the BNI team. Even through the post-op complications and the eventual return of her seizures and rages, they gave Grace a break – they gave her a portion of her life that wasn’t consumed by seizures.
I have never once regretted the surgery that gave us four and a half more years with her. Four and a half years of memories. Four and a half years of her telling us she loved us every time we left her sight.
What I regret is that we never knew about SUDEP. That not one member of her medical team ever mentioned it. That we sent her to bed that night without knowing the risks, without knowing there were seizure detection devices that could detect some of the seizure types she was experiencing.
Grace’s spirit. The years we had. What we didn’t know and wish we had. All of it – that is why I am still here.
To the parent who just received this diagnosis
To the parent who just received this diagnosis and doesn’t know how they’re going to keep going —
You are not alone. I know the world you’re in today looks nothing like the one you woke up in yesterday. But I promise you, there is a community on the other side of this moment that will walk every step of this with you. That was the initial catalyst for my cofounding Hope for HH. That is what Grace’s life made possible.
To the parent, caregiver, or adult living with HH who has made it to the other side
To the parent, the caregiver, the adult with HH who has made it through diagnosis, through treatment, through the hardest of it – who finally has some room to breathe again.
I know the hesitation. I felt it too. Stepping into volunteering, into advocacy, into being a visible part of this community – it asks something of you that you might not feel ready to give, even after everything you’ve already given. It can feel safer to close that chapter and just be grateful it’s behind you.
But here is what I’ve learned: no one else is coming to do this. Not because no one else cares – plenty of people care. But almost no one else has what you have. Whether you lived it yourself or sat beside someone who did, you know what it is to not be believed. You know what the 2 a.m. searches feel like. You know this syndrome from the inside, in a way no textbook teaches. That knowledge is not a burden you have to set down once your own fight quiets down – it’s the exact thing this community needs next.
You don’t have to do everything. You don’t have to do it all at once. But if you have even a little bit left to give, a story, an hour, a donation, a share on Facebook – it matters more than you know. It’s how this organization got built in the first place: by people who weren’t done yet, even when they had every reason to be.
A special thank you to the adults living with HH Syndrome
Grace had limited expressive speech. As her parents, we watched her constantly, documenting everything, spending hours trying to understand exactly what she experienced during a gelastic seizure, during a rage, during her anxiety, her depression, her sensory issues, through the multiple MRIs – doing everything we could to advocate for her properly, without ever really knowing what it felt like from the inside.
Hearing your stories over the years – through emails, conference calls, at our Meet & Greets, in our community Facebook group, at our Patient and Family Conference, and every other time this community has stepped up to make an impact – has been life-changing for me. Hollie’s, Carrie’s, Taylor’s, CJ’s, Adam’s, Ezri’s, Lucy’s, and so many others’ – you’ve unknowingly confirmed so many of the assumptions we had to make because Grace couldn’t tell us herself. In a way I never expected, you have become Grace’s voice. You are the future I imagined for her. Every driving license earned, every degree finished, every friendship made, every job kept despite a body that doesn’t always cooperate, every photograph taken, every piece of art made, every piece of jewelry beaded – I see it, and it matters more than you know. Keep going. Grace would have been so proud of you.
To the clinicians and researchers working alongside us
There’s one more group I want to thank directly.
On the morning of Grace’s surgery, once all the pre-op work was completed, her neurosurgeon, Dr. Harold Rekate, personally came down and took her to surgery himself, with his final words to us: “Don’t worry, I will take care of her like she was my own granddaughter.”
This September, reading Dr. Weil’s words in this same series, I recognized that instinct again – he wrote about treating every child the way he would want someone to treat a member of his own family. I don’t think that’s a coincidence, and I don’t think it’s rare among the people who choose this work. But I do think it matters more than most people realize. When your child has something this rare, this complex, this poorly understood, the doctors who see your child as family before they see a case are the ones who carry you through it.
To Dr. Rekate, to Dr. Weil, and to everyone in this international community of clinicians and researchers who share this same approach – thank you. You bring comfort to families during one of the most difficult and traumatic times of their lives. It is appreciated more than words can say, and it gives this community hope to know that the people caring for our patients, and researching this disease, see the person behind the diagnosis – behind the tumor, behind the comorbidities.
To our volunteers, past and present — and a special thank you to Lisa
None of this exists without our volunteers, past and present. The ones who showed up for one conference and the ones who have shown up for seventeen years. Every hour given, every event staffed, every family welcomed by someone who understood, because they’d been there too, that is this organization. I wish I could name every one of you here.
But I want to name one. Lisa Soeby has been beside me since the very beginning, one of the original co-founders of this organization. She has been with me through some of my darkest moments and talked me off the ledge more times than I can count. She has been my cheerleader when I needed a pep talk, and my partner, side by side, building this into the organization it is today. Lisa, I could not have done any of this without you. Thank you.
To everyone who has shown up for this community
Every morning, when her Pa left for work, Grace said the same thing to him – a small ritual that framed how she met each day, and how she wanted the people she loved to meet it too.
Have a good day.
She wanted that for all of us while she was here. I know she wants it still.
Thank you for giving it everything you’ve got!
💜 Erica
Thank you, Erica, for 21 years of giving it everything you’ve got — starting with Grace’s diagnosis, and for every family who has walked through this community’s doors since. This organization exists because you turned unimaginable grief into a lifeline for hundreds of families who came after. This is why we fight.
Inspired by Erica’s story? Join the fight for every Hope for HH family. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
This is the final story in Give It All You’ve Got, our series for the 17th International HH Syndrome Awareness Month. Browse all stories in this series → hopeforhh.org/blog/tag/give-it-all-youve-got
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