The Beginning
Tristan arrived right on time, a perfect start with no complications. But around 5–6 months old, we began to notice something wasn’t right. He was making unusual, repetitive movements—and he cried so much, in distress we couldn’t soothe. We went back and forth to doctors, tried different formulas, reflux medications… yet nothing brought him relief. The answers we needed felt so far away.
By 8–9 months, deep worry set in—his development felt different, slower, but we were told “some children just take their time.” Then one day, everything changed. His odd movements escalated, becoming nearly continuous. Desperate for clarity, we researched and stumbled on infantile spasms—a rare form of epilepsy. We took him straight to hospital, video footage in hand. The paediatrician listened, acted fast, and the next day an EEG confirmed it: infantile spasms. We had a name—but it was only the beginning.
Unraveling the Full Picture
As doctors looked deeper, more pieces fell into place. A serious infection had gone undetected early on—triggering the spasms and causing significant brain injury. Alongside that came more diagnoses: spasticity, generalised dystonia, cerebral palsy, and microcephaly (a smaller brain). The spasms eventually settled with medication—but Tristan emerged as a beautiful, medically complex little boy living with multiple conditions, including daily seizures.
His seizures are mostly absence and focal ones—brief, and he recovers quickly—but his dystonia is a different battle entirely. It’s relentless, twisting his body, stiffening his muscles, and fighting against him every single day.
The Hardest Days
Between ages 3 and 4, we faced one of our scariest moments. Tristan was admitted to hospital in status dystonicus—a severe, life-threatening dystonic crisis. Multiple strong relaxant medications struggled to bring him out of it. His CK levels were dangerously high, and doctors spoke of placing him in a medically induced coma to keep him comfortable. But just before that step—Tristan showed a flicker of improvement. Slowly, he pulled through. That day we saw just how fierce, and how fragile, his journey could be.
Beyond Movement: The Invisible Struggle
As he grew, we learned dystonia affects more than muscles. By age 7, after years of gut pain and flare-ups linked to digestion, he was diagnosed with GI dystonia—his digestive system working differently too. He now receives tube feeding with specialised formula; it took so many trials, so many adjustments, to finally find one that fits. We’ve learned to manage every detail: how much, how fast, every small tweak matters. It’s never perfect—but he is so much more comfortable now.
Finding Balance, Fighting Forward
We’ve walked through years of trial and error, learning every warning sign, every trigger. We built a dystonia action plan—knowing when to act, how to manage pain and gut flare-ups, using buccal midazolam when crises strike. That preparation means fewer emergencies, fewer surprises.
He’s also faced two spinal surgeries and three hip surgeries—yet he keeps a good attendance at school, and brings so much joy to everyone around him. When he’s not in pain or fighting a flare-up, he’s happy, bright, and full of life. He doesn’t let his conditions define his days.
Tristan with his dad, Adrian
Who Tristan Is
Tristan isn’t a list of diagnoses. He’s a brave little boy who faces more before school than most adults face in a week. He’s resilient beyond measure, smiling through pain, and teaching us all what true strength looks like. Dystonia, CP, epilepsy, microcephaly—they shape his path, but they never shape his spirit.
Why We Share His Story
We share Tristan’s journey to shine a light on the invisible complexity of dystonia—how it affects not just movement, but the whole body. To show that early detection matters, that listening to parents matters, and that every small victory is worth celebrating.
“Tristan’s body may work differently, but his heart beats just as loud, his courage is unmatched, and his joy lights up every room.”
