# @childrenscolo on Instagram

- **Type:** Image
- **Original URL:** https://www.instagram.com/p/DXP2v_lCVEO
- **Gondola URL:** https://gondola.cc/posts/68564172-childrenscolo-instagram
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/49d2240fc6.jpg
- **Posted:** 2026-04-17T21:23:51.000+00:00
- **Account Owner:** Children's Hospital Colorado (@ChildrensColo) — https://gondola.cc/ChildrensColo

## Caption

Only about 600 people in the U.S. have cystinosis. The Root brothers account for three of them. 

When the eldest, Marcus, was born, his family noticed regular vomiting and delayed growth. At 18 months, he was diagnosed with cystinosis, a disease that causes damage to many of the body’s important organs. 

His two brothers, Christopher and Austin, would also be diagnosed with the rare genetic disease before the age of 2. In all three cases, the condition caused cystine deposits throughout the body — including the kidneys — speeding up organ decline. 

When Marcus was 10, his kidneys reached a critical point. He received his transplant in 2016, followed by Austin (then age 9) in July 2018 and Christopher (then age 10) in September 2018. But while their medical journeys look the same, the boys behind them certainly aren’t. 

“They're individuals,” says their stepmother, Nicole. “Their personalities are all very different, and their strengths and their needs are different. We really celebrate that.” 

Marcus, who is almost 20, is learning to play guitar and loves video games — particularly Call of Duty and Life is Strange. In fact, you can often find them all gaming together. Christopher, now 18, is the most organized and a linear thinker. He’s looking forward to graduating in May and gaining more independence, even if that looks different than it might for other teens. He’s also excited to move out one day soon. Austin is the youngest at 17. He’s particularly fond of movies, including all things Marvel and Star Wars. He enjoys dancing. And even though he sometimes struggles with back pain from his condition, he doesn’t let that stop him. 

Though each of the boys requires complex care, physical therapy, multiple medications and a close eye on hydration, Nicole says the big, blended family is focused on joy. 

“We're always celebrating transplant day and organ donation because without that gift, our boys would not be here,” she says. “We are just always trying to find the joy and live, right?” 

#HereItsDifferent #DonateLife #DonateLifeMonth #KidneyTransplant #PediatricOrganTransplant #cystinosis #HereRareIsCommon

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## Tags

cystinosis, donatelifemonth, donatelife, kidneytransplant, hereitsdifferent, pediatricorgantransplant, hererareiscommon

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