It can be difficult for youth with kidney disease to connect with others their age. Safe spaces and groups that understand the experience of kidney disease are scarce, seeing as the number of children suffering from chronic kidney disease (CKD) in the US is low compared to some other more prevalent illnesses. Northwest Kidney Kids (NWKK), founded in 2006 by Randall Jenkins, is a nonprofit organization that aims to provide educational opportunities and a strong support system to kids with chronic kidney disease and their families. NWKK is the only organization with a focus on helping minors with CKD in the Northwest, stating that their mission is to provide the tools and support necessary for living with a lifelong illness.
NWKK provides a variety of programs, from prevention services, to group activities like fundraising events and summer camps, all aimed at providing a community for kids with kidney disease. Jill Brown, executive director of NWKK, says the community within the organization has changed life for her and her eight-year-old daughter Kylee, who battles kidney disease. “I have met some of my closest friends through NWKK and their children have become Kylee’s friends,” says Brown. “When we’re at Family Camp and the teens jump in to support Kylee and provide her opportunities to participate and hang out, it means the world to me.” Brown also talks about how rare it is to find such an understanding group of individuals who she can talk with, saying there are a lot of common misunderstandings around kidney disease and what it means to have a transplant. “When you put people together that understand that, then the conversation can dig deeper and support can happen on a different level,” she says.
Families and parents are a big focus of NWKK, but the children are who the program mostly concentrates on. Eva Velez (11), has been a part of the organization for 14 years, since she was two years old. The Velez family is one of the families that has been with the organization the longest. Velez says that the support she receives from the community is unparalleled, and the fellow kidney kids she’s met are some of her closest friends. “It’s a group of people that have such a real love for each other, even though I only get to see all of them once a year at summer camp and maybe occasionally at other NWKK events.” It’s rough to have so few people understand what daily life is like for someone with kidney disease, and Velez says it’s great to have a support system that knows the lifetime battle. “It’s something we all have in common and that basically nobody else knows what it’s like to go through, and how it affects you for the rest of your life,” she says, “It’s a relationship between all of us that’s hard to explain because I don’t have it with anybody else but them.” Velez says that NWKK has made her more confident and open about her illness, and has made it easier for her to make friends. Members also learn about self-care strategies and how to advocate for what they need for their own health.
Rocky Ramirez and Dakota Watson are two members of NWKK whose lives have been changed for the better by the organization. 16-year-old Ramirez hasn’t been a kidney kid for long, but the time she’s spent with them has been rewarding. Ramirez went to an event after her kidney transplant, and felt immediately welcomed. “My favorite part of being a kidney kid is knowing there are other people who I can relate to and talk about health with,” she says. Ramirez says that her healing process may seem over, but she will continue to encounter difficulties and her fellow kidney kids will be there to support her. 17-year-old Dakota Watson has been with NWKK for about three years, and likes having people he can confide in about his disease. When asked what they’d say to someone considering seeking support from the organization, all three members responded with an overwhelming “Go for it!” saying they don’t regret joining for a second.
Northwest Kidney Kids is a nonprofit, so it relies on donations. The annual summer camp for kids and families in August is a good example of a large, community-driven event that requires donations to run. The camp is completely free for families, so outside funding is essential. In May, NWKK holds their Kidney Kids Gala, which is their largest fundraising event of the year and supplies money for the resources and tools they provide to children and families. NWKK also holds an annual 5k, 10k and Family Fun Run called Strut Your Kidney to raise awareness and fundraise for kidney disease. March is National Kidney Month, so opening up a dialogue surrounding chronic kidney disease is helpful in raising awareness for CKD. Don’t be afraid to reach out to organizations that support kids with CKD and ask how to help or donate. NWKK does the amazing and life changing work of helping kids feel accepted, loved and empowered within their kidney kid community all over the Northwest.