You never truly grasp someone’s struggles until you see them firsthand. For years, Jane Park has shared her daughter Grace’s battle with epilepsy online, but words could only convey so much. Her latest Instagram story, however, captures the heartbreaking reality in a way no post ever has.

Park, on Friday, shared a deeply distressing video of Grace, warning viewers with a “Trigger warning.” “I’m gonna share a seizure video next…The camera had trouble focusing, but I’m kinda glad that it didn’t focus.” The clip was taken in the rearview mirror of Park’s car while she was stopped at a traffic light. The haunting video shows a poor Grace gasping and convulsing for breath in her seat – a moment Park described as one that “takes her f**king breath away.”

In an emotional caption, Park opened up again about what her heart goes through watching the same scene multiple times a day. “I can tell it’s coming [the seizure] bc her behavior changes. Her tone of voice and body language change. She starts moving and squirming her body like she has restless leg syndrome all over her body. And then boom…” she explains.

What pains her more is that Grace’s situation does not seem to get any better. Park further adds that her seizures have recently intensified, having grown in both frequency and intensity. What’s even worse to admit is that there is no tangible solution for this. “She’s not a good candidate for brain surgery. (already consulted with Hussain at UCLA), failed all meds and is LGS, has a VNS, and I’m just spiraling because we are having way more bad days lately.” By “Hussain,” she likely meant Dr. Shaun Hussain, who is a pediatric neurologist at UCLA.

In fact, just a day earlier, Park had foreshadowed her growing despair. Then, too, in a string of Instagram stories, she confessed how Grace’s deteriorating condition has left her emotionally drained. Park, feeling like a “bad mom,” disassociates herself when the 5-year-old goes through it. “I can’t do sh*t for my kid to help stop her epilepsy makes me cry,” she wrote, frustratingly.

Each day, the 37-year-old, who retired from pro golf to care for her daughter, follows a grim ritual. An eye on the clock, timing the duration of the seizures, while a hand on her chest, making sure Grace is still there, holding onto her life. The visual of this can make anyone shiver. But for us, it can be a triggering image; for Park, it is a lived reality.

Even earlier this year, the retired LPGA pro shared another gut-wrenching incident. Grace, who was in the middle of her therapy, got a “big ugly seizure”, which made her pass out for an hour, as she tried to recover. Another clip showed what began as a joyful interaction between mother and daughter, with laughter, kisses, and giggles, was ruined by a “GD seizure.” Even joy, Park explained, could be a trigger for Grace.

So what exactly is it that Grace goes through?

Grace’s battle with Intractable Epilepsy

Grace suffers from intractable epilepsy, which is a form of drug-resistant epilepsy where seizures cannot be controlled with medications. Her condition was later identified as Lennox-Gastaut Syndrome (LGS), a rare and severe childhood epilepsy that is characterized by multiple seizure types, cognitive impairment, and abnormal brain activity. Grace, too, is non-verbal, immobile to an extent, and highly sensitive to her surroundings.

Grace’s story mirrors the harsh reality of Lennox-Gastaut Syndrome (LGS), a rare and severe epilepsy affecting about 48,000 people in the U.S. Known for multiple daily seizures and developmental challenges, LGS often resists all treatments—even advanced therapies like vagus nerve stimulation or specialized diets, as noted by the Cleveland Clinic. For parents like Jane Park, the emotional toll is crushing; studies show that caregivers of drug-resistant epilepsy suffer intense anxiety and burnout. Yet, Park’s continued fight to share Grace’s journey reflects the strength and resilience of families battling the world’s toughest epilepsies.

Her story began in July 2021, when a just 10-month-old Grace suffered from back-to-back catatonic seizures that caused her brain to swell and permanent neurological damage. For a month, she lay in the ICU, her tiny body sustained by machines, while the doctors told Jane Park and her husband Pete Godfrey that Grace might never recover.

Yet, they keep fighting through. Just last month, Grace celebrated her fifth birthday. For most children, it’s a normal occasion — but for her, it was a major milestone. Doctors had once predicted she might never live to see this day. But she proved them all wrong. As Park says, “We are losing, but we show up every day.”