Bringing visibility to a rare disease | OHSU Foundation
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Nevaeh was diagnosed with Alport Syndrome, a rare genetic disorder that causes kidney disease, at four years old. Her family turned to the specialized physicians at OHSU Doernbecher Children’s Hospital to lead the way on this lifelong disease.

A soft-spoken, but confident teenager, Nevaeh is an advocate for other kids with the disease. Hear from Nevaeh — in her own words — about her experience at Doernbecher and her hopes for the future.

“I want to be a nurse. I would love to work with kids or in the NICU with the babies. With the care I have gotten as a teenager and as a child, I can use my experiences to treat other patients and their parents well, too.”

Nevaeh DeWitt

Read below for a transcript of Nevaeh’s audio story:

My name is Nevaeh and I’m 15 years old. I have Alport Syndrome, and it’s a genetic kidney disease. I’ve had Alport Syndrome my whole life, but I was diagnosed when I was four years old by getting a kidney biopsy. Going to Doernbecher and growing up with Alport Syndrome, I got to learn pretty quickly what was happening, especially with my kidneys and my body. I was really lucky because it didn’t really affect anything physically, so I was able to have a pretty normal childhood.

It’s really scary with Alport Syndrome — you don’t really know what the next step is, especially because kidney function is always changing with medicine I’m taking or my blood, the protein loss, or my diet. Things are constantly changing with Alport and, in the unfortunate event that I have to get dialysis or a new kidney, I know there will be specialists to help me.

My favorite part of Doernbecher is going to lab. I love getting my labs done. I mean, I’m not a big fan of needles, but I love the vibe of the doctors and the technicians, and I love all the different kinds of bands that you can choose. There’s all these little parts of going to get your labs done that just makes the visit a little more fun.

Doernbecher is an amazing place, and I feel like as long as you’re willing to help them — whether that’s raising money or advocating for them — I feel like that’s just opening up a lot of possibilities and ways to help kids, especially kids in difficult situations.

I want to be a nurse. I would love to work with kids or in the NICU with the babies. I was in a NICU for a little while, and I really love the stories of the amazing care parents have gotten. I feel like with the care I have gotten as a teenager and as a child, I can use my experiences to treat other patients and their parents well, too.