Camp Connections was 'such a savior for us' says mom of daughter living with kidney disease

During winter break in December 2020, Erin Melkonian's daughter Jane was unexpectedly hospitalized. Jane, who was five years old at the time, had caught a harmful type of E. coli that quickly turned into a serious, life-threatening condition called hemolytic uremic syndrome (HUS). Jane quickly went into kidney failure, followed by lung failure. She was rushed to the ICU, where she remained for several months. 

"Nobody knows [what caused it]," explained Erin. "It was winter break at the time, so we were all home eating the same thing, so we have no idea how she came in contact with that."

Whatever the cause, the result was an E. coli infection that affected Jane's kidneys along with a host of other organs including her pancreas, bowels and brain.

"[She] became encephalopathic [which means her brain was not functioning properly]. Her brain had swelling and bleeding and she went blind," explained Erin. "But her eyes were fine. It was some part of her brain that was damaged in the process." 

"Her kidneys immediately shut down and we were in the hospital for about three months," said Erin.  After an initial stay at a local hospital, Jane was transferred to Stanford and Lucille Packard Hospital. Even though Erin said she "knew nothing about kidney disease" before this experience, she said she learned a lot so she could advocate for her daughter.

"I just remember asking a lot of questions," Erin said. "I feel like I got a Stanford education just by being right there among those Stanford professionals [and] I remember that sometimes when I met a new doctor, they'd [ask], 'oh, are you in the medical field?' I was like, 'no, I'm just a mom.'"

After a long three months in the hospital, Jane was released with a diagnosis of stage four kidney disease. The swelling in her brain had cleared up, her vision came back and she was able to talk and move around with assistance. She continued with physical and occupational therapy and received monthly check-ups.

Soon after leaving the hospital, Jane was placed on the transplant list. Fortunately, Jane has not needed dialysis and is currently inactive on the transplant list because her kidneys are still working.

But recovery has not been without its challenges. 

"When she got out of the hospital, she was not as strong as all the other kids, and she had to learn to walk again, learn how to talk, and it was hard to explain all that," said Erin.

Now, Jane's kidney health is monitored every two to three months, and she has not lost any kidney function since she left the hospital in 2021. "There is some anxiety that comes with the notion that we will probably end up in the hospital again for a transplant," said Erin. "But we're just going to take every day one day at a time."

A big part of that, Erin said, is focusing on things they can control at home. This includes what they eat and drink. And it's not just what Jane eats – it's what the whole family does. "If we're not going to let her have a hamburger, then none of us are going to have a hamburger," said Erin. "It's just a decision that me and my husband have made. And so that is hard when you go to a birthday party and there's French fries and hamburgers, but over time we've kind of gotten more used to it and there's less complaining."

Beyond the physical adjustments, Jane faced social and emotional challenges after leaving the hospital. Luckily, her doctors at Stanford recommended they join the American Kidney Fund's Camp Connection program. "They brought us a backpack full of stuff when we were at our visit one day, and I just remember it brought the biggest smile to my daughter's face," said Erin.

Camp Connections is a free, virtual camp program that provides a monthly dose of fun for children and teens living with kidney disease, like Jane. Jane's overall health – mentally and physically – has been steadily improving, but Erin said that when she first got out of the hospital, Jane was "very visibly depressed." "For those first years when she got out of the hospital, Camp Connections was such an amazing, amazing, outlet for her. It was such a savior for us to be able to every month get those boxes and for her feel so special that she gets to do this."

Camp Connections also provides a unique virtual space for children, families and hospitals from across the United States to form bonds that might not be possible otherwise.

"It's been really great for Jane to see other kids with kidney disease because she sees, oh, they look just like me," said Erin. "And sometimes we're on the Zoom and she'll see other kids in the hospital, and I feel really warm at the fact that she can say, 'oh, I remember how that was. I understand those kids.' It's not a scary thing to see a kid hooked up to all these things. So, I like that she's able to relate to kids that way as well and see that."

Despite how difficult this experience has been, Erin emphasized that she thinks that kids living with kidney disease "can live full happy, healthy lives." "They should be encouraged and challenged (with age-appropriate challenges) because it's not something that should be looked at as something that weakens you," she said. "It has a potential to be a very empowering thing. Like, I can do all this, and I have kidney disease."

Erin has taken this lesson to heart and said that she also knows now that she is stronger than she realized. "We're probably going to have to go back in the hospital again, and I know, gosh darn, as not fun as that was, I know I have the ability to fight if I need to fight."