Roland's Journey
See how Roland was able to start VILTEPSO soon after being diagnosed with Duchenne, and how he stays entertained during his home infusions.
What was Roland being diagnosed with Duchenne like?
Amanda White, Roland’s mom
We found out that Roland had Duchenne just before his second birthday. The day after, my brother was like, “You have to keep moving.” So, I just have to work harder, play harder, and love him harder.
It was hard for me with all the genetic stuff. I found out I’m a carrier. That was really difficult, because for the longest time, you feel like it’s your fault. Nick was tremendously supportive, though. I remember one time, all he said to me was, “You know, I love you and Roland.” That’s such a simple statement. But it’s all I need to know.
Roland was diagnosed in February of 2022, and we were able to get VILTEPSO started for him in May of 2022.† We had one infusion at the hospital, and then we started home infusions.
Does Roland taking VILTEPSO give you hope?
Nick White, Roland’s dad
VILTEPSO gives Roland the opportunity to make some dystrophin. So, yes, Roland taking VILTEPSO gives us hope. Just knowing that’s happening. That really helps.
Amanda White, Roland’s mom
We don’t know what the future looks like, but we’re hopeful. We’re really grateful that VILTEPSO was an option for our son.
How does Roland inspire you?
Nick White, Roland’s dad
He’s happy all the time, you know? He’s such a sweet kid. He keeps me going, the light of my life. It just doesn’t get any better.
What has your family’s journey with Duchenne been like?
Mark Watkins, Roland’s grandfather
Our journey is just over a year old. I’m not going to lie – it was tough at first. But it enabled us to focus on Roland. And I would say that it’s helped us reprioritize the things in our life.
How would you say Duchenne has affected Roland?
Mark Watkins, Roland’s grandfather
So far, Duchenne has affected Roland just by him being a little bit slower than his peers. He was slower to walk, which is kind of what cued us in.
If you could say one thing to another caregiver of a child with Duchenne, what would it be?
Mark Watkins, Roland’s grandfather
If I could say one thing, it would be to let the emotion pass, and then live for each moment.
†Each situation is unique and time to get on therapy will vary from patient to patient.
Explore some of our other VILTEPSO Heroes
Mason
11 years old
Hear how Mason gets his weekly infusions at home with a registered nurse, and listen to his mom Rebecca’s...
Diego
19 years old
Hear Diego’s mom Leslie explain why she moved with her sons to the U.S. so Diego could get access to VILTEPSO,...
Michael
14 years old
Hear Michael’s brothers describe how Michael views Duchenne as more of a special ability than a disability, and...
Mason
11 years old
Hear how Mason gets his weekly infusions at home with a registered nurse, and listen to his mom Rebecca’s...
Diego
19 years old
Hear Diego’s mom Leslie explain why she moved with her sons to the U.S. so Diego could get access to VILTEPSO,...
Michael
14 years old
Hear Michael’s brothers describe how Michael views Duchenne as more of a special ability than a disability, and...
*These stories describe unique experiences with VILTEPSO and are not intended to represent the average individual’s response. Individual patient results with VILTEPSO may vary.
