Peyton Dempsey’s parents were determined their daughter, even while dealing with a serious chronic condition, would see herself as a normal kid.
“She started kindergarten with a (catheter) bag,” said her mother, Danielle Sickmeier Dempsey of Festus. “Kids asked, ‘What is that?’ and she just said, real matter-of-fact, ‘Duh! That’s my pee,’ and then they all just went about their business.”
“Our No. 1 goal was for her not to be handicapped,” said her father, John Dempsey of De Soto. “We didn’t want anyone to dictate her limits.”
Peyton, 7, a first-grader at Hillsboro Elementary, died Oct. 7 after a lifelong battle with megacystis microcolon intestinal hypoperistalsis, an extremely rare disorder affecting the bladder and the entire gastrointestinal system.
Peyton was diagnosed shortly after birth.
“There were only like three cases in the U.S. at that time,” Danielle said.
While still an infant, Peyton had a central line installed to provide nutrition directly into her bloodstream, bypassing her ineffective stomach, bowel and bladder.
Despite her condition, Peyton was a happy baby, with a full head of reddish curls.
“She was feisty, always laughing,” her father said.
When Peyton was 6 months old, her parents flew with her to Boston.
“TPN (central line feeding) is hard on your liver,” Danielle said. “They had an experimental trial for this drug that repairs the liver damage. It’s since been FDA approved, but for about two years we flew back and forth to Boston to get it.”
Danielle’s parents, Allen and Roxanne Sickmeier of De Soto, helped take care of Peyton.
“We both work full-time jobs, so they watched Peyton during the day,” Danielle said. “And she had an IV line, a G-button to be drained, a catheter. They took care of everything.”
In July 2018, Peyton was put on the waiting list for a liver, kidney, small bowel and pancreas transplant. In August, a health crisis landed her in the hospital for emergency surgery.
“The surgeon said the bowel just fell apart in his hands,” Danielle said.
That incident pushed Peyton up to the top spot on the transplant list, and the family got the call on Dec. 8.
“She got her transplant on Dec. 9, in an 11-hour surgery,” John said. “When the surgeon came out, he said, ‘I don’t know how she was alive.’ He said she had to have been in a lot of pain.
“When the doctor says that, it makes you realize just how strong she is. She just handled it, because she didn’t know anything different.”
After the transplant, Peyton was “like a totally different kid,” her mother said.
“Yeah, she still had a catheter, and she had an NG tube down her nose, but she could do all kinds of things, like swim. She could be a normal kid.”
And, for the first time in her life, she could eat – something she initially wasn’t crazy about.
“She’d say, ‘I only have to eat when I work with Judy,’ her food therapist,” Danielle said.
School staff had to use a little tough love on Peyton.
“She spent the first two weeks crying,” said Sheila Erb, one of Peyton’s teachers. “The transition was tough. But I had to put aside my sympathy for this fragile little girl.
“I looked at Peyton and very firmly said, ‘That’s enough! You’re here to learn and I am here to teach you. So, knock off the crying and sit up and let’s get to work!’ Her response was, ‘Got it!’ and from that day on she worked like a champ.”
Although divorced, Peyton’s parents remained committed partners in the fight to give their daughter a normal life.
“We accepted her condition, but we didn’t accept her self-pity,” John said.
They said they tried to help her understand what was going on and work around challenges.
“She knew her disease in kid terms,” Danielle said. “We’d discuss why she had to do this or that.
“She could name all her medications and what they did,” John said. “If a nurse did something different, she’d call them out.”
Peyton had a close bond with her sister, Libby, who is 16 years older, and she had a lot of friends, her parents said.
“Peyton’s personality was bigger than life itself. People were drawn to her,” John said. “There was a lot to be learned from her and the way she looked at the world.”
Peyton recently learned she was to be granted a trip to Orlando in January through the Make-A-Wish Foundation.
“She was going to Universal to see the minions and to Disney to see the princesses,” said her grandmother, Roxanne. “She was so excited she was going to see both.”
Peyton spent her last weekend with her father.
“We went to Grant’s Farm, we went to the father-daughter dance, we played games,” John said.
Back with her mom on Sunday evening, the little girl complained of a bellyache.
“As with any kid, you have to take it with a little grain of salt,” Danielle said. “But then she started coughing. I thought she had aspirated, but the doctors think she had an infection that was undiscovered and it went straight to her heart. It just stopped.”
Both parents say Peyton laid out a clear message for those she left behind.
“Laugh, live and enjoy, and don’t take things too serious,” John said.
“She was the most courageous, the strongest person I ever knew,” said her grandfather, Allen.
The family will continue to advocate for research and fundraising.
“We don’t have a direction yet,” Danielle said. “But we know we want to do something to help MMIH, to keep her name alive.”
“We will do something,” John said. “You can’t let Peyton down.”
“Life Story,” posted Saturdays on Leader Publications’ website, focuses on one individual’s impact on his or her community.