04/17/2026
This week marks one year since our world flipped upside down.
Last winter, we noticed Camilla wasn’t herself—so tired, no energy. A simple doctor’s visit turned into a call from pediatrics telling us to pack a bag and go straight to the hospital.
Two nights, countless tests, and more questions than answers led us to SickKids, where we spent almost a week with the endocrinology team.
She was first diagnosed with Central Diabetes Insipidus… but her extreme fatigue didn’t make sense. Doctors began investigating ROHHAD syndrome—something so rare and terrifying, it completely shook us.
I’ll never forget the moment her hospital room filled with specialists. I had been holding it together all week for her… but that’s when I broke.
How could my perfectly healthy 10-year-old be facing something like this?
Over the past year, we’ve made countless trips to SickKids, with an entire team working alongside her.
A sleep study in May led to a BiPap machine.
In July, a diagnosis of hypothyroidism.
But still… no answers for the exhaustion.
Until November.
Narcolepsy.
After a year of watching her struggle and grieving the little girl she used to be, we finally had answers—and a path forward.
The day she started her new medication, she cried happy tears… because for the first time in so long, she could stay awake in the car.
Such a bittersweet moment—relief, hope, and heartbreak all at once.
And as hard as this past year has been, there have been moments of light in the middle of it all.
Some of my favourite memories with you have come from our trips to SickKids—making slime at Marney’s Lounge, walking to the Eaton Centre, and trying lots of yummy foods.
Little moments of joy that make the hard days feel a little easier.
My brave Leo girl… no child should have to go through this. But you’ve faced it all head-on.
You are stronger, braver, and more resilient than I could have ever imagined. 🤍
