The joys of being a kid

Greyson's story

Greyson’s family home in northern Castle Rock gives the sense that the folks in this neighborhood like their outdoor space. Houses are spread out in between fields of native grasses. Sprawled over an acre of land, the Saunders family home includes two dogs and five chickens, which Greyson is always happy to talk about.  

“They're just the most adorable things ever. Sometimes they'll let you hold them, and we have a chicken — we call her penguin because she looks like a penguin sometimes. She’ll jump up on the chair you're on or on your lap,” Greyson explained.  

When Greyson isn’t gushing about his chickens, he is likely playing a game, enjoying time outside, practicing coding, or telling a joke. His sense of humor extends to even talking about his medical journey, referring to it as a “dump truck on a rainbow.” 

Greyson’s first year and a half of life were what his parents call “normal.” Then he regressed, losing his language, and avoiding eye contact. That is when doctors diagnosed him with autism spectrum disorder. His parents worked with doctors to do interventions including identifying severe food allergies which led to dietary restrictions including avoiding gluten, corn and corn syrup. 

At about age 6, Greyson was doing well enough that his parents enrolled him into full-day kindergarten. Two months into the school year, a virus quickly spread through the class. All the other kids recovered, but Greyson did not. 

Instead, his symptoms worsened, and he experienced extreme jaundice. Finally, doctors diagnosed him with autoimmune hepatitis which meant his immune system was attacking his liver. 

“It's just very fast, very severe and very dangerous, and nobody was expecting it. And it was scary,” said Amber. 

Luckily, doctors were able to save his liver. However, some bone marrow cells were in his liver at the time prompting his immune system to see his bone marrow as an enemy and attack it. This meant that Greyson would need a bone marrow transplant. 

“We never thought that he would need chemo, radiation and somebody else's immune system. We had no idea that's where this was headed,” said Amber. 

John and Amber were not matches for the transplant and neither were their two adult children. It became a waiting game for about a year until Greyson matched with an anonymous donor from Poland. Finally, on Good Friday of 2018 — a date the family commemorates with a second birthday for Greyson every year — he had his bone marrow transplant and was on his way to better health.  

During this whole ordeal when Greyson’s immune system was severely vulnerable, he was at serious risk for any other diseases or infections, so the Saunders family lived a life the rest of the world became familiar with in 2020.  

“So, remember that one kid who had to be in a bubble basically his own entire life? I was basically a less severe version of that, but still pretty severe actually,” Greyson described that time in his life.  

Greyson couldn’t go to school, his family limited interactions with the outside world and if they left, they wore masks and sanitized everything when they returned. 

The two years following his transplant, his health and immune system recovered until suddenly he started experiencing symptoms like rapid heartbeat and a fever, but doctors couldn’t land on a diagnosis. Ultimately, doctors identified Greyson’s symptoms as Postural Tachycardia Syndrome, also known as POTS. It essentially means blood pools in his legs and doesn’t pump up towards his heart or head well enough. For this reason, Greyson can’t stand or walk for very long without feeling faint or worse and he uses a wheelchair for longer distances.  

Still, at Roundup River Ranch Camp, Greyson doesn’t hesitate to participate in his favorite — climbing the rock wall and ziplining. Each foot wedge and hand hold propels him up the 40-foot climbing wall to a ropes course before dropping off on Greyson’s favorite part, sliding down the long zipline off the platform.  

“Greyson really brought camp back with him, and he brought back this sense of maturity that we couldn't have given him,” said Amber of the way going to camp built up Greyson’s confidence and independence 

More than just a break for the kids at camp, the five days away also give parents time off from being full-time caregivers.  

“From a parent's standpoint he's going somewhere safe. So, it's in some ways … it's a relief; it's just kind of like a little I can step back and breathe for just a little bit," said John.  

The Saunders family are the camp’s number one fans. Greyson first went to camp in 2019 and stayed involved in camp through the pandemic with online and delivery programs.  

“Nine out of ten doctors recommend it, that one doctor is experimental with some radioactive toothpaste — so don't mind them. So, nine out of nine doctors recommend it,” he said.