Story
Carry the Weight – For Arlo 💜
On 17 October 2026, my friend Sam and I will be walking and running for 24 hours, carrying a 20kg backpack.
Why 20kg? Because that’s the weight of my little boy, Arlo.
This isn’t about how far we can walk. It’s about helping people understand the weight that Arlo—and families like ours—carry every single day.
Arlo lives with a cavernoma deep within the back of his brain, as well as epilepsy. A cavernoma is a cluster of abnormal blood vessels in the brain or spinal cord. Some people live with them without ever knowing they’re there. Others, like Arlo, face seizures, neurological symptoms, and the constant uncertainty of what tomorrow may bring.
There is currently no medication that can make a cavernoma disappear.
There is no way of knowing if it will remain stable or whether it could bleed in the future.
For us, that uncertainty never goes away.
Every seizure reminds us of the reality of Arlo’s condition. Every headache makes us wonder. Every hospital appointment brings hope but also fear. Every day we carry questions that no parent ever wants to ask.
Will today be a good day?
Will his cavernoma stay stable?
Will there be another seizure?
Will our lives change in an instant?
These are thoughts that quietly accompany us every single day.
For 24 hours, Sam and I will carry 20kg on our backs.
We’ll feel tired.
We’ll feel sore.
We’ll want to stop.
But after 24 hours, we’ll be able to take those backpacks off. Arlo can’t put his condition down. Our family can’t put the worry down.
That’s why we’re taking on this challenge—to make the invisible weight visible.
We’re raising money for Cavernoma Alliance UK, a charity that provides vital support, trusted information, and a community for families navigating life with cavernomas. We also hope to raise awareness of a condition that many people have never heard of until it turns their world upside down.
If our challenge inspires you, please consider making a donation.
Every pound raised helps support families like ours.
Every share helps more people learn what a cavernoma is.
Every message of encouragement helps us keep putting one foot in front of the other.
This challenge is for Arlo.
For every child living with a cavernoma.
For every family carrying an invisible weight.
And for hope that one day, no family has to live with so much uncertainty.
Thank you for helping us carry the weight.
With love,
Fran & Sam 💜