Blog post

AKF's National Camp Program: The hidden gem

Lily Goldstein explains why AKF's National Camp Program is one the best things that has ever happened to her - besides her kidney transplant, of course.
Lily Goldstein holding up a Barnard College bag

I was born with a rare genetic disorder called brachiootorenal syndrome that affected my hearing and my kidneys. I was about 12 months old when I was diagnosed, so I have lived with it my entire life. Fortunately, I did not have to worry about getting a diagnosis and how that would affect me mentally or emotionally. I have just had to live with it my whole life. It is my normal.

When I was 11 years old, I got a kidney transplant, and since then my life has turned around for the better. Before my transplant, I was taking 40 pills a day (eight pills, five times a day), and receiving eight shots a week (one every day, and two on Sunday). Now, post-transplant, I am only on two prescription medications to keep my kidney alive. With the help of my care team, I can continue managing my kidney health. I am also grateful to my care team for connecting me to the American Kidney Fund (AKF).

Through AKF, I have connected with many people and resources, including children who have kidney problems just like me, through a program called Camp All Stars. Camp All Stars is one of the best things that has ever happened to me – after getting my kidney transplant, of course. Camp All Stars, before the COVID-19 pandemic, was an overnight trip at a camp that anyone 10 and older with any kind of kidney issue could attend. It was an opportunity for kids who live with kidney disease to attend a summer-like, sleepover camp and do camp activities, all while nurses and doctors were there to take care of our advanced medical needs like dialysis and catheterization. Not something most sleepover camps typically provide! Camp All Stars also helped us to meet other kids going through similar medical challenges.

When COVID hit, all of us as campers were so sad because it was the one time a year we could go to camp where everything (medically) was taken care of for us. However, soon after it was canceled, AKF announced it was going to do a national camp virtually. At first, everyone was a little skeptical. How could they recreate the fun and community of sleepaway camp virtually?

Fortunately, we were pleasantly surprised to find that virtual camp is still as fun, if not more fun, than it was pre-COVID. At first, I was not sure how I felt about participating. Not only did we have school on Zoom at that point, but it seemed almost everything else we did was on Zoom as well. It was hard to want to go to another Zoom, especially for something I was not sure would be that fun. Nonetheless, one of my friends that I made during in-person camp told me she was going and that I should come too just to check it out, and I am so glad I did. It was the most fun I had had in a long time!

Since that first virtual camp meeting, I have gone to almost every single one. Even when I traveled to a country in a time zone that was seven hours ahead, I continued attending and participating in the virtual camp meetings. I knew that it was the one time a month I could rely on to talk about my experience with kidney disease, hear the experiences of other kids my age and, of course, have a lot of fun doing different activities – including building gingerbread houses, doing science experiments, creating art projects and so much more – all while connecting with each other on Zoom.

Now that I am in college, I still continue to participate because of how much I love and appreciate it. It is a safe space where you can ask for advice and give advice on different topics. For example, one night we were doing an art project and we started talking about what we thought the best ways to remember to take our medications were. We had a whole discussion about what we did and what we would want to try. It is almost impossible to have these kinds of meaningful conversations with other kids your age who have similar medical problems to you anywhere else, and here we were, with the great support of AKF's virtual camp Zoom, having them.

Since participating in AKF's virtual camp program, I have gone to every other AKF event I can go to. They are always filled with smiles and stories. Being part of AKF's community is an opportunity and experience for which I am so grateful. It is hard to realize that you are not the only person with kidney problems, and more specifically, you are not the only child with kidney problems. That is why I love AKF's camp program. It gives you a direct opportunity to meet and connect with people your age and share your experiences. As of right now, there is a tentative date for a return to in-person camp for the year of 2023. Until then, I am so excited to continue doing the virtual camp Zooms.


Lily Goldstein

Lily Goldstein was born with a rare genetic disorder called brachiootorenal syndrome. Regardless of the inimical-sounding disease she has, Lily is still just like any other person. Her favorite animal is an elephant, her favorite color is blue, and she loves cooking! Lily is currently a student at the Barnard College of Columbia University and is an active participant and lover of AKF’s Camp All Stars.