Raising money for Hirschsprung

Biking across the Netherlands for my sister, 790 km in 3-4 days. 🚴‍♂️

Why am I doing this? Because she’s my sister. I know how much she struggles with it.

For most of us, going to the toilet is something we never have to think twice about. But imagine having to manually help yourself go, using external assistance, just to get the stool out.

That’s the reality for my sister and many others living with Hirschsprung’s disease.

Help me spread awareness about Hirschsprung’s disease and raise money for research. ❤️

In her own words, this is what it’s like to live with a rare disease:

“There are eight billion people in the world. And yet, I have never met someone like me.

Hirschsprung disease is so rare that most people have never even heard of it. And most of the time it can feel very lonely. Because when people don’t know something, they don’t see it. And when they don’t see it, they don’t understand it.

This disease eats depletes you inside, but from the outside I still look like a normal girl. Sometimes I think thats cruel.

Hirschprung doesn’t come with instant sympathy or understanding. There’s no shared language for it, no immediate recognition. So you learn to keep going. You go to school. You go to work. You smile. You show up. You build your life around routines people don’t see. You learn to manage chronic pain quietly.

You learn how to function and keep going when your body doesn’t want to and even when it can’t. 

And over time, that does something to you.

It makes you feel unseen and unheard. 

Hirschsprung has taken things from me.

It took away feeling comfortable in my own body.

There were moments I couldn’t wear what I wanted. Moments I felt embarrassed in my own body. The medication and treatment changed things too. My hair, my energy, my confidence. Small things, maybe, to the outside world. But not small when you live in it every day.

And still, I keep going.

Because I have to. Because there is no other choice.

But what I wish, more than anything, is to feel seen. To feel understood. To not have to explain, or justify, or prove that something is real just because it isn’t visible to others around me. 

This is what living with Hirschsprung is like.

Quiet. Invisible. And Constant.

Sinead Hatma”