06/15/2026
💔 When Families Run Out of Options
As parents, we spend our lives trying to protect our children.
But what happens when your child has a rare brain vessel disease, local treatment options have been exhausted, and you believe the care that could help is somewhere else?
This week, a British Columbia mother shared her fight to secure continued treatment for her son Nathan, who lives with a life-threatening brain AVM (arteriovenous malformation). Her story is making headlines, but for many families in our community, the emotions behind it feel painfully familiar.
The details of every medical journey are different.
The fear is not.
It’s the fear of watching your child suffer.
The fear of running out of options.
The fear of hearing “no” when you’re desperately searching for hope.
One quote from Nathan’s mother stopped me in my tracks:
“Every day, worrying that this could be the last day that I could spend with my child.”
No parent should have to carry that weight alone.
At AVM Alliance, we hear stories like this far too often. Families navigating rare brain vessel diseases and pediatric stroke are frequently forced to become researchers, advocates, fundraisers, care coordinators, and caregivers all at once.
Whether you agree with a particular treatment approach or not, one thing remains true:
Families facing brain AVMs need support.
Children affected by stroke and brain vessel disease deserve continued research.
And no parent should feel invisible while fighting for their child.
Today, we’re sending love and support to Nathan, his family, and every family walking a similar path.
💙 Because stroke has no age limit.
🦋 Because rare does not mean alone.
🐷 Because every child deserves hope.
Natasha Hepburn describes her 9-year-old son Nathan as a vibrant and joyful soul, even when he’s faced with life-altering circumstances. When Nathan was 5, he suffered a seizure, and his health quickly took a turn for the worse. Nathan was then diagnosed with an extremely rare and life-threatening...
