‘Hope is a powerful medicine’: Children with life-threatening medical conditions build a community
COLORADO SPRINGS, Colo. — When Christina Middlestaedt’s daughter Jessica was diagnosed with chronic hereditary pancreatitis about two years ago, she was terrified.
“It was tough. It was like my whole world — our whole world — just shattered in pieces,” Christina said. “I was so afraid to lose her.”
Since Jessica’s diagnosis, she has had a total of 13 surgeries in order to treat her condition. Doctors told her that she needed to have her pancreas removed or risk pancreatic cancer. At 17 years old, Jessica had a total pancreatectomy.
“I’m still dealing with the mental aftermath of everything that I went through,” Jessica said. “It was very hard.”
It was after Jessica’s total pancreatectomy that Christina found a flier in the hospital for HopeKids, an organization that serves families that have children with life-threatening medical conditions.
“We provide a calendar of events and a unique support community for these families,” Robbin Brown, the executive director of HopeKids, said. “We really try to surround families with the message that hope is a powerful medicine.”
The organization has six chapters around the United States: Colorado, Arizona, Minnesota, Tennessee, Texas and Kansas City.
Three staff members, including Brown, operate the Colorado chapter. In 2021, they hosted 353 different events around the state for families.
Brown credited the support from event partners, who provide opportunities at a discounted cost or no cost at all, and volunteers for HopeKids' capacity to host so many events.
“We really try to connect other families with families who know exactly what they're going through because they're going through it themselves,” Brown said.
Thornton residents Niki Cooper and her family have been attending HopeKids events since 2018. Niki’s son, Dario, is a child with medical complexities.
“Dario is the most joyful child on the planet,” Niki said. “The moment he steps into a room, he just lights everyone up. He's got this contagious laugh. He's got a beautiful smile. He has a way of connecting to people. He can just bring out the best in people.”
According to Niki, families that have children with medical complexities can have difficulties navigating resources available to them.
“You can’t find something if you don’t know if it’s out there and you don’t know where to even start,” she said.
While Niki and her family have yet to meet another child with the same diagnosis as Dario within HopeKids, they have met other families with children that have medical complexities. The families talk and share resources with each other on online forums.
“Just the connection of having a child with your medical complexities and things like that and being a support person for one another — that has been really wonderful,” Niki said.
Niki added that HopeKids events also provide opportunities for families to have fun and relax.
“We’re often so busy with hospital visits and appointments and everything surrounding what your child’s illness is that sometimes you kind of lose sight of what it is to just be a regular family and do regular family things,” she said.
The first HopeKids event that the Middlestaedt family attended was a Rockies game. Christina said it was a special moment.
“With us being from Germany, we didn’t grow up with baseball,” Christina explained. “So just experiencing this atmosphere in the stadium and going to a professional baseball game was really special to us and something we couldn’t do before Jessica’s big surgery.”
Jessica told Rocky Mountain PBS that she was nervous at first. But when she arrived at the event, she found that the experience was a lot easier than she would have thought because people were so understanding.
Now, the Middlestaedt family regularly attends HopeKids events every month.
“Everybody gets to meet somebody who can relate to them,” Jessica said. “Your parents get to meet people … Siblings get to meet other siblings or even other critically ill kids. And then you also get to see, ‘Hey, I'm not alone. I'm not alone.’”
Theresa Ho is the RMPBS Kids digital content producer. You can reach her at theresaho@rmpbs.org.
Julio Sandoval is a multimedia journalist at Rocky Mountain PBS. You can reach him at juliosandoval@rmpbs.org.