That’s kind of when it hit us
She had pneumonia when she was two. We had her at a local hospital until it got really bad and they couldn’t really take care of her there, because they didn’t have the means to do that, so we brought her to Children’s. At the time we thought it was just pneumonia, and there are many kids who go to the ICU for pneumonia, and they’re out within a week or even a few days.

And then it just increasingly got worse, as she came down with the HUS, which attacked every organ. So that’s when we realized that she was really sick. When the nurses say to you, “She’s really sick,” you’re like, “Oh.” That’s kind of when it hit us, when we saw her on all of the tubes and everything. It happened within about a week’s time: she went from having pneumonia to having this life-threatening blood infection.

Mother of Lydia, 6

 

Her bones weren’t calcifying properly
Samantha was born with congenital bilateral hip dysplasia, and she was diagnosed with that shortly after she was born. It’s a fairly common thing where the hips are out of the sockets at birth and it’s usually diagnosed within the first six weeks, but her doctor missed it and didn’t diagnose it until she was six months old. Subsequently she was being followed and they noted that she wasn’t calcifying properly, that her bones were not forming the right way that they should have. Because of that, they did blood work, and in the blood work we found that she had kidney disease: it was cystic and dysplastic kidney. Both kidneys were affected. One kidney had atrophied shortly after birth, we figured sometime after she was six months old, between that and four years. The other kidney that she had was like a kidney of an 80 year-old woman. So she had only 33% function at that time. So then it became all about just making up for what the kidney was unable to do – because the kidney still functioned, she was urinating fine and all that, it just wasn’t filtering properly.
Around the age of about 11, her kidneys started to fail more and more, so they set us up with, “Listen, this is going to happen, we’re going to do a transplant.”

Mother of Samantha, 22

 

Three days later, she was on dialysis
What happened was we went to the parade. The next day she had a slight temp. The next day she just started, you know, showing signs of a virus. So three days went by – I brought her to the pediatrician’s, they said she had a virus. The next day we were up there because her temp was 104.3. And then they sent us home, they brought her fever down. Two days later we were back up there, same issues. So then we brought her to the pediatrician’s because she was peeing a little brown: it turned out to be blood. They told us it was some kidney disease that goes away within six to eight months. For the next couple days, she just kept spiking fevers and throwing up, and by the time we got her back to Children’s the second time, her eyes were jaundiced, she was paler than pale, she was bloated, and she couldn’t even move…That Saturday, they kept saying, “Well, just keep an eye on her. If she doesn’t get any better…” but the fevers just kept going, erratic. Then that Sunday, she spiked a real fever, and you could see the jaundice in her eyes. And then we took her in, they admitted her, and three days later, she was on dialysis.

Mother of Olivia, 15