Our Journey

Keeping good records

Despite repeated consultations and a lack of answers from multiple healthcare professionals, Karen refused to accept uncertainty as an outcome. She began documenting Mikayla's health with precision and persistence - recording every seizure, every trigger, and every surrounding circumstance - determined to uncover what others had missed.

Over time, distinct patterns emerged. Karen noticed, for example, that Mikayla's severe episodes followed physical exertion. Yet despite this growing body of evidence, the original diagnosis remained unchanged.

"It was heartbreaking watching her suffer," Karen recalls. "Emergency departments began to feel like our second home."

Undeterred, Karen continued to advocate relentlessly for her daughter. She immersed herself in research, studied medical literature, and compiled detailed records that gradually transformed fragmented events into a coherent picture. What began as handwritten notes and spreadsheets evolved into a structured body of insight - one that ultimately helped drive meaningful progress in Mikayla's care.

Testing the limits

As the patterns sharpened, Karen began to focus less on isolated events and more on conditions. If physical exertion played a role, she needed a way to understand how Mikayla's body behaved when that demand was removed.

For three weeks, Mikayla used a wheelchair. It was a deliberate, temporary decision. Not intended as a solution, but as a way to reduce energy expenditure and observe what changed. Some clinicians were uncomfortable with the approach. Karen understood the concern, but stayed focused on the question she was trying to answer.

The change was immediate and consistent. With exertion limited, Mikayla's episodes reduced. The connection between energy use and symptom onset became clearer, turning a diffuse history into a coherent pattern.

That period proved pivotal - not because it explained everything, but because it brought precision. It reinforced an insight that would later shape MiKare Health: when symptoms are tracked thoughtfully over time, even simple interventions can reveal relationships that routine care may not have the space to see.

The light at the end

After nearly two hundred seizures, Karen's persistence was finally met with openness. In 2024, a clinician took the time to listen to the detailed information Karen had gathered and suggested trialling a blood glucose monitoring device.

Within hours of application, the readings revealed a critical truth - Mikayla's blood sugar levels were dropping dangerously low. The pattern Karen had identified was real.

With an accurate diagnosis and appropriate treatment in place, Mikayla's health began to turn. Her strength returned. She started running again. Gradually, she reclaimed the rhythm of everyday life that had once seemed out of reach.

Although she is still living with the underlying chronic illness, she is able to manage her symptoms and live a full life.

The MiKare Health App

Using the framework learnt during Mikayla's journey and written and explained in our book Mum, Please Help Me!, the MiKare Health App was developed. Following the lessons learnt, the documents we created, all our manual processes have been turned into the features you use today. So what took me 18 months to solve, which is even a short time compared the typical 5+ years for some, technology can now support you to have faster, detailed summaries of your health to strengthen your voice when you need it.