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COLORADO SPRINGS – As part of Donate Life Month, to raise awareness of being an organ donor, in this story we’re following up on the Root brothers, Marcus, Christopher, and Austin, from Canon City. All three are under the age of 12, and all three have a rare genetic disease called cystinosis.
Dr. Margret Bock, who is a pediatric nephrologist with Children’s Colorado, explains,
“These kids with nephropathic or intermediate cystinosis ultimately require a kidney transplant and end up needing to be on lifelong medications.”
While medications and treatment have improved the quality of life for those with cystinosis, there is no getting around kidney failure at some point.
For the Root family, that meant the news, that not just one of their children would require a kidney transplant, but all three.
Gary Root remembers the gravity of that realization. “It’s scary when you find out your child needs an organ. You’re willing to go jump in and say, ‘take mine’ but it’s not always that simple. Then you hear stories about people waiting years for a new kidney and having to be on dialysis and their health is getting worse and worse. The only thought that kept going through my head before Marcus was transplanted was, ‘Okay, are we going to have to do this with all three, be on dialysis until they are close to18 years old?”’
Dr. Bock explains for kids with cystinosis, “A big hurdle is kidney transplant because of the effects that cystinosis has on the kidney. It affects the quality of life monumentally. Prior to the transplant, all three of these boys needed to take huge volumes of very unappetizing supplements. Salt, potassium, and phosphorous are all the things that [a body]needs to grow and thrive. Oftentimes, it’s variations of forms of baking soda and you can imagine drinking that and water in very large volumes – when you’re a very small kid – it’s not easy. Many kids with cystinosis end up needing a feeding tube.”
The first to get a new kidney in June of 2016 was the oldest of the three brothers, Marcus. Gary remembers, “With Marcus, we knew it was a risk, but I’m not going to deny anything that can help my son. We put an article out for a live donor through the paper in Canon City and as soon as we put the article out we got a call that there was a donor for him.”
Then in July of 2018, it was the youngest of the three brothers, Austin. Garland says, “With Austin when he got the call hopes were he and Christopher could have the same donor, but it didn’t work out that way.”
Just two months later, in September of 2018, it was Christopher’s turn. Garland says with Marcus leading the way, Austin and Christopher both benefited from a brother go through a kidney transplant. “With Christopher’s recovery, he saw how well Austin did he just wanted to do better. It was a competition between them, he wanted to do better, wanted to get out of bed faster, be off pain medication faster, be out of the hospital faster, everything. As soon as they got back to the room at the Ronald McDonald House in Denver, they were playing – like nothing had happened.”
While still facing numerous health challenges, with the gift of a new kidney the boy's overall quality of life skyrocketed almost immediately.
Gary says, “Their drive to eat went up, their growth went up, their weight went up, their energy level went up, even their teachers at the elementary school noticed they were doing so much better.”
Dr. Bock explains, “When the new kidney goes in the need for supplements essentially goes away. So the quality of life is improved incredibly and they get all the benefits of having a normal kidney again. That means help with growth, it helps with all the other things that normal healthy kidneys do. The cystinosis continues to affect the rest of the body, but the kidney is protected.”
Even for the Root family, the speed at which these boys improved after the transplant was surprising. Gary says, “You are relearning your own child that you’ve sat there and watched from birth. They basically just became a whole different person, but a better person, and their attitudes on life are so much better.”
Before the end of organ donation awareness month, we’ll show you how the boys are doing these days, the special bond they share, and the one thing they hope each and every one of us will do.