By Michelle Karas
Updated: June 26, 2017 at 10:46 am • Published: June 20, 2017
Last Christmas, Priscilla Rowland had a modest request - a really cute pair of sneakers to wear to school.
The 12-year-old had her sights set on a pair of Converse low tops. Before major surgeries on her feet for a rare genetic condition, the Fort Collins pre-teen couldn't think of sporting the footwear she coveted.
Tamara and Bob Rowland sought the best care in the nation for their only daughter after she was diagnosed with Multiple synostoses syndrome - a rare developmental bone disorder which causes her bones to fuse.
They consulted with doctors at Vanderbilt University Medical Center in Nashville, Tenn., when they were living there, and with doctors at Boston Children's Hospital at Harvard Medical School. Priscilla's condition caused her feet to grow inward, so the soles faced each other. She had to learn to walk on the outsides of her feet. For years she could wear only thick-soled hiking boots that had ankle support - hence her desire for cute shoes.
"We were told we'd have to wait until she was about 13 to have foot surgery, because her foot plates would stop growing then," said Tamara Rowland. "When she was 10 - in November 2015 - we started to look for the best health care for her."
Only about 80 people in the U.S. have the same condition, so finding the right doctor for Priscilla was a challenge. When the family moved to Fort Collins they connected with a highly recommended pediatric orthopedic surgeon who happened to be a relative short jaunt away - in Colorado Springs, where there will soon be a new Children's Colorado Hospital.
Dr. Brian Shaw, the local specialist who will be moving to the new Children's campus when it opens in April 2019, said MSS is extremely rare and congenital. Priscilla's mom, Tamara Rowland, also has it.
Shaw was able to start the first of two needed surgeries on Priscilla about two years ago.
"It's a specialty type of procedure," he said, noting that it made things easier for the Rowlands, who didn't need to travel to the Boston hospital for the care Priscilla needed, when he had the expertise to perform the surgeries here. "It's very unusual to have, but we have it (the expertise) here in Colorado Springs."
It was also recommended that Priscilla have the surgery close to home in case of complications.
"Priscilla is otherwise a healthy youngster, but she was born with a severe form of club foot that affected both sides," Shaw said, explaining that the condition doesn't respond to usual treatment because her bones and joints formed abnormally. "In fact, she was missing all the bones in the middle and back of her foot. A normal foot has eight bones. She only had one large bone and all the bones and joints were fused together."
Priscilla's parents "did the best they could to put her in shoes and get her in activities that didn't involve running or jumping," Shaw said. "But as she got older, her feet got worse."
A facility just for kids
Shaw noted that a community must be a certain size to attract specialists who are experts in difficult diseases and procedures.
"Endocrinology, general surgery and all the specialties we think of for adults we now have here in Colorado Springs (for pediatric patients)," Shaw said. "It's long overdue."
Assembling the team of physicians, nurses and other staff needed for the facility is a continuing effort.
"Our goal is to be able to take care of most every child in the community right here and not have to go to Denver," Shaw said.
The 294,000-square-foot Children's Hospital Colorado complex - a $154 million project - is being built on the UCHealth Memorial Hospital North campus in northeast Colorado Springs. It will feature a pediatric-only emergency room, operating rooms, sleep study unit, epilepsy monitoring unit and age-appropriate waiting rooms among many other assets, all designed to focus on care for kids.
On Monday, crews began drilling the structural columns that will provide the building's footing, said Greg Raymond, regional VP, Children's Hospital Colorado.
"We're in the process now of finalizing preparations of the construction site," Raymond said. "Our construction date was pushed out a bit. We're already off schedule."
He added, "It's an interesting project in that UCHealth has a project going on adjacent. We've been figuring out site logistics. We're sharing a central utility plant, which required a level of coordination. This allows UCHealth and Children's Hospital to save money."
Raymond stressed that "It's the people that make a Children's Hospital what it is. It's not just the building. We are focused on getting kids better and home. A pediatric hospital is really a community asset. A Children's Hospital is there when you need it. We need to make sure it's there when our kids need it."
Philanthropy - including events like this Saturday's Climb for Courage at Falcon Stadium at the Air Force Academy - has played a key role in raising money for the new facility. "The annual goal is around $200,000 for the Climb for Courage," Raymond said. "That community support truly is humbling. It goes both to capital and to programs, making sure kids are back where they should be."
"This is our third year for the Climb for Courage stair climb race and family festival," said Sonya Norris, director of events for Children's Hospital Colorado Foundation. "There are 2,700 stairs if you do the whole race - or 2.7 kilometers. It's family friendly, but also speaks to the Incline runner."
The race starts at 8:30 a.m., and the free family festival with food tastings, face painting, a climbing wall and more, runs from 9 a.m. to noon.
"We raise a lot of money for Children's Hospital in this community," Norris said. "We ask every participant to raise $50, kids raise $25 - and it all goes to construction of hospital."
In the past two years, Climb for Courage raised a total of $300,000.
Playing without pain
Tamara Rowland knows the worth of having a pediatric center in southern Colorado.
Priscilla was recently able to run her first mile at school - a speedy seven-minute mile, at that. But Tamara remembers when "Pris" couldn't walk around the block without pain. Recently, the rising 7th grader started playing in a soccer league and loves it. Priscilla is also an avid and competitive horseback rider and, since her surgeries, is able to now fit her feet properly in the stirrups.
She's also ready to take on the 2,700 steps at the Climb for courage, along with her parents. The day will be their 17th wedding anniversary, and there's no better way they'd like to spend it.
"We're excited about the Climb," Tamara Rowland said. "We wanted to sign up right away. When we learned there was something to benefit the hospital in Colorado Springs we jumped on board."
Tamara, Bob and Priscilla will be climbing Saturday.
"She (Priscilla) was very adamant about doing the regular race," Tamara Rowland said. "I look at her now and think about everything she's been able to do for the last year and a half since her surgery. We're just really grateful to Dr. Shaw."
When Tamara was young, there were only eight people in the world diagnosed with MSS, she said.
"Doctors gave my parents a very grim diagnosis. They didn't know what to call it," Tamara said, recalling her own surgeries in 1977. "I found out when I was pregnant that Priscilla might have this ... my heart just broke."
But ultimately Dr. Shaw was able to provide the care that Priscilla needed, at UCHealth-Memorial Hospital Central. The care was top-notch, Tamara Rowland said, but with the new Children's Hospital Colorado, Priscilla would have been able to be treated in an entirely pediatric hospital environment.
"I think it's wonderful to have world class care right here," Tamara Rowland said.
As for Priscilla, she's enjoying being able to taking her black Lab Hazel on runs now, cycling with her dad and participating in soccer practice every Tuesday.
She still sees Dr. Shaw for continuing care.
"He's really nice. He has helped me. I feel like I had a fast recovery," she said.