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Rare Conditions

Not All Heroes Wear Capes, But Colton Does 

 For families like Colton’s, the costs of care can be overwhelming. That’s why our donor-funded Gillette Assistance Program exists
—to help families worry less about finances so they can focus solely on their child’s care. Not all heroes wear capes, but you can become a hero for kids like Colton when you support Gillette with your donation today. 


Colton Byrnes is 7 years old. He loves to sing and dance, and could probably perform the entire production of “Hamilton” right now if you asked him to (and you should probably ask him to at some point, because I bet it’d be good). 

His parents describe him as a warm and loving child, but there’s another thing about Colton that you might not know if you just met him: he’s had 60 surgeries to date.  

Again, he’s 7. 
Not all of the procedures were invasive, but many were and all of them certainly disrupted what most of us would think a typical childhood should be.  

“We joke in our family that Colton is the 20-million-dollar man, because cumulatively, that’s about what his medical care has cost during the course of his life,” his mother, Aubrey says. “He’s worth every penny, but that doesn’t mean that there haven’t been challenges medically, emotionally and financially along the way.” 

Coming to Gillette Children’s 
Colton At Gillette

Colton was born with a condition called VACTERL association. It is a condition that describes a wide range of congenital conditions that affect multiple parts of the body. The condition is a catch-all term for a variety of medical complications that present both short-term and long-term.  

The condition affects every individual in different ways, and to be more concise, it’s incredibly complicated. 

“Sometimes I forget that this isn’t everyone’s world and that most people don’t encounter the realities of what having a medically complex child can mean. Colton’s had multiple open-heart and brain surgeries. He’s had a tracheostomy and G-tube. He’s had tubes put in his ears, hand surgery and almost any other procedure you can think of,” Aubrey recounts. 

“We first came to Gillette around the time that Colton was four years old. He was born with a tethered spinal cord. He had the initial repair when he was younger near our home in Sioux Falls. But when he was diagnosed with scoliosis, we discovered that Colton’s spinal cord had re-tethered and were advised to seek care at Gillette. There, we met Dr. Peter Kim, who performed Colton’s most recent surgeries for tethered cord and a condition called Chiari malformation. We were also introduced to the Gillette Assistance program.” 

The Gillette Assistance Program (GAP)

The Gillette Assistance Program (GAP) is a financial assistance program that helps cover the cost of care for Gillette families. GAP is funded through the generosity of donors.  

Colton and his family“As a parent who has spent a fair amount of time in more than a few medical facilities, I think I have the experience to say that Gillette is a very special and unique place,” Aubrey says. “When you have a child who has complex medical needs, out in the world you often feel as though you’re constantly explaining from the outset of most interactions. Like there's a hill that you persistently have to climb. We’ve never had that experience at Gillette. To show up and have people see you and understand is one thing. To have them be able to provide the care you need for your child is another. But to have them have a fund like GAP that takes your worry away so that you can focus on caring for your child, it's simply remarkable. We’re incredibly grateful for the care and assistance Gillette has provided for our family.”

Colton Keeps Moving Forward

In addition to continuing to grapple with some of the complications VACTERL association can present, more recently Colton was diagnosed with scoliosis.

"Of course you never get used to hearing that your child is going to need additional medical care, but you do get better at it," Aubrey says. "It also helped to know that Colton would be able to receive his treatment at GIllette. Since we live in Sioux Falls, South Dakota, we can't get all of Colton's care there, but for the big stuff like surgery, if we have the option to go to Gillette, then that's where we go."

Colton had spinal fusion surgery at Gillette in April of 2021 with Joseph Perra, MD. Since then Aubrey says that Colton has made tremendous progress and that even in a year complicated by the global pandemic, Colton's positive attitude has never waned. 

 "I think it would be difficult to overstate just how much resiliency Colton has shown to this point in his life. I kind of can't believe it sometimes, like honestly," Aubrey says. "As his parents, there's been a lot about this that hasn't always been easy, but when you look at your 6-year-old who has gone through all of it, it makes you realize that of course, you can too, It also just makes me incredibly proud of him. Colton's spinal fusion marked his 60th surgery and we know that there will likely be more to follow in the coming years. We're confident that with his team at Gillette behind him, Colton will be able to tackle just about anything life throws his way,"

Colton and his mother with the KS95 Morning Show hosts
Colton and his family were recently interviewed by Dez, Ryan and Crisco from the KS95 Morning Show. Their interview will be featured in the KS95 For Kids Radiothon benefitting Gillette on December 10, 2021. Be sure to tune in. 

If you're a Gillette family in need of financial assistance please visit this section of our website: GAP.

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