Today’s story in Give It All You’ve Got comes from Laura, Molly’s mom.
Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. Laura’s journey with HH Syndrome began over two decades ago, when Molly was diagnosed in February 2002. After Molly’s successful surgery, life went on — raising Molly and her sister Emily, and more than 20 years of work as a college professor, later completing a PhD in business. Now living in South Carolina and retired from teaching, Laura returned to Hope for HH, bringing that research background to help bridge the gap between families and practitioners. Her story comes full circle in a way few others do: 23 years after a family’s kindness carried her through Molly’s surgery, that same family found her again this July.
What “giving it all you’ve got” looked like then — and what it looks like now
“When Molly was diagnosed in February of 2002 it was all we could do to put one foot in front of the other. I was constantly doing research to understand and find doctors to help us. When we would go to an appointment I would walk in with copies of all of her records (including MRIs) along with my ‘executive summary’ of what was going on. I would hand it to the doctor and wait for it to be reviewed before we started talking about the current appt. Looking back at that image in my mind I certainly looked crazy as I walked into an appt pushing a stroller and juggling the very large folder with all of her MRI films (pre digital films).
Today things look very different as I am a support to Molly since she doesn’t need me to be a daily caregiver. I still do a lot of research but behind the scenes and gently guide her when circumstances dictate. The time I have now, allows me to be reflective of our adventure and think about how to strategize and study things from a calmer, rested, and not panicked perspective.”
What Molly’s journey taught her that nothing else could have
“While I had ‘technical’ understanding of learning and how to present material, it was all from the professor perspective. Our HH adventure showed me how learning experiences could be different based not only on behaviors but on systems (brain structure and mechanics). During my time in the classroom, behavior was considered a big influence on how successful students were. What was missing was the concept that a student could give 1000% effort with little success. Learning about how Molly was learning led me to an understanding that had been missing about the effort & success equation for teaching. I was able to put in practice what I saw worked with Molly for the college classes that I was teaching with material I had previously taught in a different format – the results were amazing! In addition to the changes I made in my own teaching delivery I was able to present the information to colleagues which impacted their teaching.
In addition to the teaching aspect, I became a better learner myself. This was realized in completing my PhD in business. I learned how to be a researcher in ways I wasn’t aware of and now I can perform research that helps to bridge the gap between families and practitioners. This skill is something I look forward to doing for Hope for HH to observe situations looking to provide answers.”
What brought her back — and what it means to give now, not as a caregiver, but as someone who stayed
“While we were going through the storm with Molly, there wasn’t anything that we could give – time, resources, energy, etc. Now that we have come out of the storm there is so much to give. I don’t feel so panicked when I think about HH so I can be more thorough and calm in how I offer support. While I can’t change an HH diagnosis, I can offer support so family members can be present and care for the HH warrior. In being a ‘pushy parent’ I have learned to provide information to doctors that speaks their language so we can have an actual conversation that is helpful for everyone. Teaching my daughters how to listen to their gut, hear what it is saying, and what to do with the information helps us all sharpen our tools for a better outcome.”
What she’d tell a parent just starting this journey — and the full-circle moment 23 years in the making
“New diagnosis – I would say, first you are doing a great job getting to the diagnosis. While the diagnosis of HH isn’t easy, diagnosis is the first step. Don’t reinvent the wheel, take what has been compiled and use it for your specific situation.
Experienced HH – This organization doesn’t have all the answers and your information is a gift to help answer another and/or future questions. As the organization has matured, research has progressed, including how information is gathered so continue communicating which can lead to future developments.
If Molly was diagnosed today, I don’t think I would feel as alone as I did in 2002. The internet, social media, and digital resources have allowed for communities to gather without ever leaving home. That is a gift that we missed out on when she was diagnosed. We did experience the gift of community when Molly had her surgery in September 2003 at Barrow (Barrow Neurological Institute) and the Soeby family shared meals with us, sat with us in the waiting room, and supported us during our stay in Phoenix. Full circle to the conference this past July, seeing the Soeby family in person, sharing meals, laughter and support 23 years later was because of this organization.”
After Molly’s successful surgery, life went on — raising Molly and her sister Emily and continuing more than 20 years of work as an educator. Laura returned to Hope for HH after her retirement, bringing that research background to the organization now.
Thank you, Laura, showing up again for Molly, for Emily, and now for every family walking the road you once walked. Your story is a reminder of what this organization has meant to hundreds of families over 17 years: a place to land when there’s nowhere else to turn, and a community to come back to once you’ve found your footing. This is why we fight.
Inspired by Laura’s story? Join the fight for every Hope for HH family. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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