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Remi and AmeliaRemi and Amelia

Remi and Ameila Have a Bright Future

Thanks to an Innovative Treatment Delivered Quickly

Photo of Amelia and her dad

When Adam and Cristal learned that their daughter Remi had spinal muscular atrophy (SMA), their world changed in an instant. Thanks to newborn screening and timely treatment at Boys Town National Research Hospital, Remi received life-changing care before the disease could take away her ability to move and thrive.

When their younger daughter Amelia was diagnosed with SMA, the family knew exactly where to turn. Click below to watch their heartwarming story.

Watch Remi and Amelia's Inspirational Story

My dad's dreams were to play soccer, so he went to Mexico and he never came back. He just, like, abandoned us. It was hard to adapt, and I felt like I couldn't trust anybody, so I started acting up in school just for the attention, and I started skipping full days, weeks, sometimes even months. And so eventually, I got placed on probation for truancy, and then they gave me multiple chances, but I just never listened, and I ended up here.

I know my husband and I had to be intentional, very intentional, with Rob to get him to feel comfortable, to trust us, to express his feelings, to know that, hey, we practice what we preach, we lead by example, we are your biggest cheerleaders, that no matter if you're great today or if you struggle the next day, we will still love you. We will still be here to support you.

My relationship with my family teachers was amazing. Definitely with Kenny, he's a father figure to me, a mentor. And Kuori, being that mom away from home, it's like my mom in another body, and it was just amazing. They would always have talks with me just about, like, Rob, what do you want your future to be? What do you want to get out of Boys Town? And at first, when I came here, I told them I don't want nothing. I just want to leave. I want to go back home to be with my family.

But they opened up my mind and saw that, like, I have a big future outside of here. I'm in the National Honor Society, Peer Ministry, the Youth and Justice Fellowship Program. I built pretty big relationships with my peers, as I got voted into prom king. My dream life is to be a musician, because that's one of my ways of expressing my feelings, is through music.

I am excited for Rob to graduate. I believe that he will really continue to grow into someone special, achieve great things, but also sad at the same time, because it's like losing a member of the family.

I feel like it's a dream, my dream coming true.

Students working togetherStudents working together

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