Desperate teen turns to Children's Hospital Colorado for answers

Children's Hospital Colorado has been providing comprehensive care to children since it's inception in 1908. The hospital has gathered and developed top pediatric specialists and by coordinating care, they're able to effectively diagnose and treat most pediatric conditions.

Sofia was suffering a medical mystery, that at first she didn't even realize was a problem.

"I've always had stomach issues," she told CBS News Colorado.

Even when she was a baby, Sofia had stomach aches. She couldn't tolerate breast milk or most formulas. As she got older, the pain got worse.

"I remember this very specific moment where I was sitting down to eat with my family. It was literally a small piece of chicken, and I ate it, and I literally was in so much pain I couldn't move," she recalled.

That kind of pain made Sofia scared to eat and when she did ingest food, she wasn't getting the nutrition she needed.

"My weight slowly dropped to the point where I was having issues with my liver. My heart rate was very unstable, so was my blood pressure," she explained.  

"She just would barely get out of bed. She was living but really just existing," said Melissa, Sofia's mom.

Melissa did what any mom would do. She took Sofia from doctor to doctor determined to get some answers as to what was happening to her.

"It was hard, and it was very frustrating because we were not getting the answers we needed and my daughter was dying," Melissa told CBS News Colorado.

Sofia ended up being admitted to Children's Hospital Colorado.

"They placed a feeding tube, because my weight…I think I was about 87 pounds," Sofia said.

At Children's Colorado, specialists from several different disciplines came together on her case, including cariologists, neurologists, gastroenterologists, and geneticists. She's also working with the hospital's Chronic Pain Management Clinic.

"You meet with these providers for so long that it becomes like they know you. They know your family. They know what you're going through," Sofia said.

She finally did get some answers. Sofia was diagnosed with several different conditions; including gastroparesis, which is partial paralysis of the stomach causing it to not empty properly; avoidant restrictive intake food disorder (ARFID), which is a form of disordered eating; postural Orthostatic tachycardia syndrome (POTS), which is a blood circulation disorder; and Ehlers-Danlos syndrome (EDS), with is a genetic disorder that effects the connective tissue throughout the body.

"Because there is no cure for these diagnoses, it's a lot of maintenance of symptoms, and trying to mitigate against those symptoms," Sofia explained.

Sofia will always struggle to get the nutrition she body needs, but now that she has her answers she can learn to manage her conditions as part of a full life. Part of that full life is volunteering at the Courage Classic Bike Tour.

"It's my first year going; and I'm super excited about that," she said.

It's also the first year for Melissa, and sister, Bella, to bike in the tour.

"I'm trying not to psych myself out too much about it because the first day is 6-miles up hill," Melissa said with a laugh.

The two will ride 36 miles over two days. They see is as a way they can give back to the hospital that's helped them so much.

"I'm determined … like my daughter. If my daughter can get through all this, her mom can ride this ride for her and all the other kids out there that are fighting," Melissa explained. 

LINK: Courage Classic Bike Tour for Children's Hospital Colorado

Kendall is excited to be among the speakers at this year's Courage Classic Bicycle Tour for Children's Hospital Colorado. The event is Saturday, July 20 and Sunday, July 21, 2024. The tour starts at Copper Mountain with several different routes that very in length and difficulty.