In Their Words

The best way to understand Next Step is to hear about it straight from the young people who have experienced our mission at work. Their words convey better than anything else the extraordinary growth and personal progress that is possible for a young person—even in the face of serious illness—in an environment of support, advocacy and empowerment.

Check out the following stories to better understand the power of the Next Step experience.

Claudine

I was really excited to leave home for a week to attend my first Next Step Summer Campference, but I was a little nervous, too, because I didn’t know what to expect. Once I joined their Task Force (Summer Campference planning committee) I was able to connect and reconnect with peers, which helped me feel prepared. There was so much positive connection going on that I could not resist—I knew that I made a good decision for myself.

Next Step gets it! They have the ability to understand what’s important in my life. We have fun and we have real talks. I am not treated as a child. I am respected as an adult and very well-supported around my decision making.

I have become confident and knowledgeable around my HIV status. After spending time with a group of peers that are at Next Step for the same reason, I learned that we should not sit in silence and guilt. I have learned how to advocate for others and myself. I realized that this is a place of comfort to find my self-acceptance.

I know how important it is for me and my peers to have each other. Next Step has given us the opportunity to create a space where we can share stories. This has become a huge part of my life and I have learned so much from these interactions. Next Step and the other participants have inspired me to go after my dreams.

Next Step has helped me realize that I may have an illness, but it’s just a small part of me and I am much more than that.

Matt

I had never been able to connect meaningfully with my peers about my experiences with cancer because, although they loved me and were glad I was better, they didn’t get it. When I walked through the doors at Next Step’s Summer Campference, I knew that I had found a group of people that get it. Even if it’s just a casual head nod from your cabin mate as you sit down to breakfast, there is a solidarity and connection that goes deeper than any other peer group I have had before.

Other programs are too sterile. Next Step has a level of reality to it that is refreshing and makes me feel that I am being respected as an adult and an individual. I don’t like to be talked to like I am a child, and Next Step meets me at the level that I need. We have real talks, we have real fun, and we make real friends.

Next Step has helped me to look at my illness in a different light. I’ve learned how to more effectively advocate for myself. I’m not just a sick kid anymore; I’m a confident adult with something special to give to the world. I have learned that there is power in breaking out of silence and singularity and joining a group of like-minded people that share a common cause, goal and ethos.

I attended my first Summer Campference in July 2013 and have participated in two further Campferences. I also worked as Next Step’s social media intern. Next Step and all the participants have made me see that I can achieve real, concrete things regardless of my diagnosis. They have inspired me to go after my dreams, and have supported me to that end.

Khadijah

I was 10 years old when I had my first pain attack. I felt like no one really knew what I was going through until I went to my very first Next Step program: STRIVE — an after-school program for high-school teens living with sickle cell. This program gave me my first experience talking with other kids about our shared diagnosis.

I remember one time where one of my peers randomly announced during a program that “sickle cell sucks,” and he “wished he never had it.” This was a hard moment for everyone in the room, but what happened after it was awesome. Because of his sharing, our group started to have a real conversation about what it meant to have sickle cell—how many school days we missed, what meds we were taking and how we coped when we had pain. Everyone shared and, most importantly, we never had to justify our experiences or feelings. We just got it. I finally felt like I wasn’t alone.

A few years later, I had a chance to attend a Summer Campference where I became more comfortable with my sickle cell and felt empowered to manage it in a more effective way. I plan on taking all of the techniques and good times from Next Step with me to college and hopefully beyond that, leading me to living a successful life with sickle cell. As a recent high school graduate, I’ve proved to many people that just because this disease runs through my body it doesn’t run my life. That moment at Next Step helped me start to understand this.

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