Today’s story in Give It All You’ve Got comes from Dr. Alexander Weil.
Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. It speaks to families and warriors most directly, but it resonates just as deeply with the clinicians and researchers who’ve chosen to stay in this fight even when the science is far from settled.
Dr. Weil is a pediatric neurosurgeon and epilepsy surgeon at CHU Sainte-Justine in Montreal, where he helps lead the pediatric epilepsy surgery program. His clinical and research work focuses on understanding and treating complex drug-resistant epilepsy in children, including HH Syndrome, using approaches such as stereoelectroencephalography, minimally invasive ablation, disconnection, and neuromodulation. His research is increasingly focused on understanding how seizure and cognitive networks are altered in children with epilepsy and how these insights can be used to personalize treatment. He is a member of the Hope for HH Medical Advisory Board.
What “giving it all you’ve got” looks like for Dr. Weil
“For me, ‘giving it all you’ve got’ starts with something very simple: treating every child the way I would want someone to treat a member of my own family.
That means not giving up when the answer is difficult or when the first treatment does not work. It means continuing to look for solutions—first for the individual child sitting in front of you, and then through research so that we can provide better answers for the children who come after them.
Despite tremendous advances in our understanding of epilepsy and the development of new surgical and minimally invasive treatments, many patients still live with debilitating seizures and profound cognitive, behavioral, and developmental consequences that greatly affect their quality of life and that of their families.
I have been fortunate to see both sides of HH Syndrome. I have seen children whose lives were dramatically transformed after their seizures were controlled—children who returned to school, developed friendships, learned, played, and in many respects returned to a normal childhood. I have also cared for children who have been profoundly affected by the disease despite everything we can currently offer.
That contrast is a powerful motivation. It reminds me both of what is possible and of how much work remains to be done. I believe that by working together across disciplines, institutions, and with the HH community itself, we have the potential to make a very significant difference over the next decade.”
The family that changed how he sees HH Syndrome
“One family in particular changed the way I understood the potential impact of treating HH.
Their daughter had lived for more than six years with frequent gelastic seizures, major learning difficulties, significant behavioral challenges, and almost constant anger. Her mother later described how fragile their family life had become. They were frightened about the future. Their daughter struggled to form friendships, and even relationships within the family had become extremely difficult.
She underwent laser treatment for her hypothalamic hamartoma.
What struck me was how quickly her family noticed a change. Within hours after surgery, they described a calmness that they had not seen in years.
Several years later, her mother wrote to me again. She described a completely different child: bright, engaged, doing well in school, singing and dancing, surrounded by friends, showing empathy toward others, and becoming what her mother called a ‘positive leader.’
That message has stayed with me.
As surgeons, we often talk about seizure freedom, percentages, complications, and technical outcomes. Those things are important. But that family reminded me that successful treatment can mean something much larger. It can change a child’s developmental trajectory, relationships, independence, and sense of self—and sometimes transform the life of an entire family.
It also reinforced for me why we need to identify and treat these children as effectively and as early as possible.”
What’s coming — and why there’s reason for hope
“I think the next step in HH research is to understand the disease at a much deeper level than simply identifying the hamartoma.
We increasingly understand epilepsy as a disorder of brain networks. In HH, we want to understand how the hamartoma interacts with the rest of the brain: how seizure networks develop and spread, how cognitive and behavioral networks are affected, why some children develop much more extensive disease than others, and how those networks change after treatment.
My own research is increasingly focused on studying these seizure and cognitive networks and trying to understand how they are altered in children with HH.
At the same time, because HH is rare, we need to work together. No single center can answer these questions alone. One of the most important goals for the coming years is to build large, collaborative datasets and ultimately prospective registries with high-quality clinical, imaging, electrophysiological, neuropsychological, treatment, and long-term outcome data.
If we can do that, we can move beyond simply reporting that a treatment works in a certain percentage of patients. We can begin to understand which treatment is most appropriate for which child, when it should be performed, why treatments sometimes fail, and how we can better protect cognition, behavior, and development.
That is where I see the greatest opportunity.
We already know that treatment can be transformative for some children with HH. The challenge now is to understand the disease well enough—and collaborate broadly enough—to make those outcomes more predictable and available to more families.”
Thank you, Dr. Weil, for showing this community both sides of what you carry – the transformations that are possible, and the honesty about how much work remains. This is why we fight.
Inspired by Dr. Weil’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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