Meet Mason

What has your family’s journey with Duchenne been like?

Rebecca Keller, Mason’s mom

Our journey started when Mason was about one and a half years old. He had gross motor delays, which we ended up investigating and finding out he had Duchenne muscular dystrophy. That process took several months. We were in Philadelphia at the time, and then we’ve kind of moved around trying to find the best care that we can for Mason.

When did Mason start taking VILTEPSO?

Mason started VILTEPSO in the spring of 2021.

What are the VILTEPSO home infusions like?

It’s been really great having a nurse here at home, and not having to go to an infusion center and see somebody new every time. He’s had the same nurse for several months now, and we use a cream that works really well to help make him comfortable.

How does Mason inspire you?

Something I really love about Mason is that he doesn’t see himself differently from any other kid. He’s also very quick to push me aside and say, “I can do this.” And I have to trust him and his process. That’s been really good for me.

If you could say one thing to another caregiver of a child with Duchenne, what would it be?

I would say that you’re stronger than you know. You don’t realize when you hear that diagnosis how many hopes and dreams you need to let go, and how much it can change your life. But you also recalibrate and say, “How important were those things?” It really helps to put what’s most important into focus.