Age 4
Falling asleep at the table
We first noticed Lucas falling asleep during dinner. At that age, it was easy to assume he was simply worn out from being a busy little boy.
A real childhood. A rare diagnosis. A growing voice.
Walk With Lucas
One little boy’s journey…
Helping families feel less alone.
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Before we had answers
Sometimes the signs are there long before anyone knows what they mean.
Lucas was a happy, active little boy who loved animals, family adventures, sports, and making people laugh. Looking back, the earliest signs of narcolepsy were already weaving themselves into ordinary moments.
Chapter 1
The First Clues
“We thought he was simply a tired little boy.”
Ages 5–6
Asleep within minutes
Car rides became predictable. Whether the trip was short or long, Lucas would often be asleep within minutes of leaving home.
Age 7
Sleep could arrive anywhere
He fell asleep during appointments, family activities, meals, and outings. He even slept on the back of an ATV while travelling over rough terrain. That was when ordinary tiredness no longer felt like a reasonable explanation.
Chapter 2
Searching for Answers
“Every appointment seemed to bring more questions.”
The search was emotional, exhausting, and necessary.
Our family learned how difficult it can be to explain symptoms that other people rarely see. We kept asking questions, documenting what was happening, and advocating for Lucas until the pieces finally began to fit together.
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Age 8
Finally… a name.
Lucas was diagnosed with Narcolepsy Type 1 with cataplexy.
The diagnosis brought mixed emotions: relief at finally having an answer, fear about what it might mean, and the beginning of learning how to support Lucas in a life that would now include daily naps, accommodations, ongoing appointments, and a great deal of advocacy.
“The diagnosis changed our understanding of what was happening. It never changed who Lucas was.”
Chapter 3
Learning a New Way of Living
“Narcolepsy became part of the routine — not the whole of his life.”
Still trying new things
Sports, activities, school, friends, and family life continued — sometimes with adjustments, sometimes with a nap first.
Naps are still necessary
Lucas continues to nap every afternoon and often sleeps during car rides or in a restaurant booth. Rest is not laziness; it is part of managing his day.
Sometimes sleep wins
Exciting plans do not prevent sleepiness. His body can require rest even when his mind wants to keep going.
Chapter 4
Finding Our People
“For the first time, we did not have to explain.”
FACES Campference · Maryland
Belonging changed everything.
Lucas met other young people who live with narcolepsy. Matt and Kathy met parents who understood the worry, the advocacy, and the daily adjustments. The weekend brought friendship, practical ideas, validation, and the powerful realization that our family was not alone.
Representation matters
Meeting someone who understood
At Campference, Lucas met Nazir Stackhouse, a professional football player who also lives with narcolepsy. Seeing someone pursue a big dream while managing the same condition gave Lucas another picture of what his own future could hold.
Chapter 5
Finding His Voice
“Lucas discovered that sharing his story could help someone else.”
Narcolepsy Navigators Podcast
Lucas and Kathy shared the reality of paediatric narcolepsy on the UK podcast Baseball Dreams & Sleepy Days, its first mother-and-son episode.
Listen to the episode →Community Presentations
Lucas began speaking to local community groups, helping adults understand what narcolepsy can look like in a child’s daily life.
Patient Advisory Panel
He was selected for a Canadian narcolepsy focus group facilitated by Unumco and sponsored by Takeda Pharmaceuticals, helping ensure young voices are represented.
Today
The Journey Continues…
Narcolepsy is part of Lucas’s story. It is not the whole story.
⚾ Sports fan🧡 Proud Inuk🎖️ Volunteer🏅 Student leader🎤 Advocate❤️ Son & uncle🌅 Dreamer
Every family’s path is different. We hope walking with Lucas helps you feel understood, hopeful, and less alone.
Continue the Journey →