After I got my diagnosis, one of my biggest fears was whether it would affect my family. Genetic testing confirmed what I had quietly dreaded: my son, who was just 8 years old at the time, also has VEDS.

That news hit harder than my own diagnosis. When it’s your child, the emotions are different, heavier. It’s not just fear for your life, it’s fear for theirs. You want to protect them from everything, and with VEDS, that isn’t always possible.

Learning Together

We started navigating this diagnosis as a team. We’ve had a lot of talks, age-appropriate but honest. I’ve tried to give him the information he needs without taking away the joy of being a kid. It's a hard balance, but I believe knowledge is empowering, even at a young age.

Parenting with VEDS, While Raising a Child With It

Some days are heavy. I’m managing my own condition, physically, emotionally while trying to be strong for my son. But there’s also a bond we share that’s hard to describe. We understand each other in a way not everyone can. We know what it’s like to carry this diagnosis and still want to run, explore, and just live.

I don’t want VEDS to define him. I want it to inform him, to make him careful, but not fearful. And that starts with how I live, too.