Having a child with a rare progressive disease is like a lifelong train ride…

Every family affected gets their own train car. You see, all of the cars are connected. Like all of the families with the rare disease. At first, you don’t know where the train is going. But you get on it because, let’s face it, you don’t have a choice.

You make friends with the other people in their cars and all try to learn from each other…not about the destination, but about the ride. You become close, because you share a journey that few others in the world understand. And the more you learn, the faster the train picks up speed. And you don’t know when the train ride will end, but you know that eventually it will be your stop.

But you don’t want the train to stop. Because this ride doesn’t have a happy ending. So the train ride you never wanted to be on now has a hint of terror every time you hear the brakes squeal. Maybe these are just bumps in the track. But you’re optimistic because hey, what choice do you have? This bump was just a surgical procedure or a short hospital stay. This wasn’t your stop. The train picks up speed again. Then all of the sudden BAM.

The train car behind you gets hit by a bus and the one in front of you is flooding. The whole train feels the shock. You’re okay this time, but it’s your friends in those cars. You have a friend in every car. You know the cars well, because they are just like yours. You can’t help them anymore because this was their stop, so you try to help the other passengers. The pain of this crash belongs to every person on the train.

And the train keeps going. Bumps and squeals and all. You keep trying to find a way off, but no one has figured out how to stop this train yet. Meanwhile, you get closer and closer to the others on the train. And somehow, you’re still grateful for this terrible ride and the time you get with all the people on it.