Rare condition means 3-year-old may have weeks to live. KC is showing support
Tucker Langford knows there’s going to be a parade on Saturday, but he doesn’t know that it will be for him.
This week, he came home from Children’s Mercy for at-home hospice care, battling a rare skin disorder and a heart condition. Doctors say he could live for a few weeks or months, but it’s hard to know for sure.
He’s often in high spirits, still cracking jokes and, at three-years-old, teaching his family about resilience.
“No matter what he’s going through, he always makes sure to have everyone around him smiling or laughing,” said Tucker’s mom, Chandler Langford, in a phone call Wednesday.
“He’s so brave,” she said.
Tucker is really into remote control toys, especially ones with wheels, his mom said.
He started with an excavator, got a dump truck and is well on his way to employing an imaginary construction crew.
His father, Dakota Langford, 27, works for Geiger Ready-Mix, a Kansas City area concrete and cement provider. So, Tucker is used to seeing all kinds of trucks at home, Chandler Langford said.
Tucker’s love for construction vehicles, and all other types of cool cars, sparked an idea among family and friends to have a parade for him when he got home from the hospital.
What started as a small gathering eventually grew to a huge following. Hundreds of people are now anticipated to participate on Saturday morning, showing their support for Tucker at one of the most difficult times in his young life.
“It still blows my mind that it’s getting this big, and it’s been our dream to do something for Tucker,” Chandler Langford said. “I mean, we’ve always said we’re going to do a fundraiser. We’re going to bring awareness. And it’s just amazing to see the support from people that we don’t even know.”
Born with ‘Butterfly skin’
When Tucker was born on Christmas Eve three years ago, doctors diagnosed him with recessive dystrophic epidermolysis fallosa, also known as “butterfly skin.”
The rare condition causes fragile, blistering skin. Blisters can happen from minor injuries, heat, and any kind of friction on the skin like rubbing and scratching, according to the Mayo Clinic.
While butterfly skin has no cure, mild forms can improve with age.
Tucker was born missing skin on his feet, chest, lips and fingers, Chandler Langford said.
Chandler and Dakota Langford have been helping him battle that condition his whole life. Tucker’s skin is tended every other day with dressings and salve to prevent new blisters.
His condition made it difficult to learn different functions as he grew older, Chandler Langford said. He cannot walk independently, and he uses a wheelchair.
The Langfords also have a 9 month old son named Waylon, who turns 10 months on Oct. 18.
Life-changing heart condition
On Aug. 26, Tucker was experiencing ear aches and had a cough and cold, so they took him to an urgent care facility. A doctor took an x-ray to rule out pneumonia and discovered that Tucker’s heart was enlarged.
At Children’s Mercy, doctors discovered that Tucker had fluid around his heart that wasn’t supposed to be there. They also found that his heart function was severely low, putting him at risk for heart failure, Chandler Langford said.
Doctors later diagnosed him with dilated cardiomyopathy, meaning the muscle around his heart is thin.
“So, he’s been on medication, and then two weeks ago, the doctors had a conversation with all of us, and they told us that they were pretty much at their end of what they can do for Tucker,” Chandler Langford said.
“He was in the hospital already for so long, and the minute that we got there, he was saying, ‘I want to go home. I miss my dogs, I miss my toys,’” Chandler Langford said. “And so we decided to bring him home. That’s when they put him on hospice, so he’s comfortable.”
Despite spending 40 days in a hospital, and his underlying health conditions, Tucker is an energetic, outgoing three-year-old, full of adventure and wonder, his mother said.
His heart condition was a surprise to his family because he never likes to slow down.
There are days where the pain is a lot to handle, and Tucker has experienced many sleepless nights, his mom said.
“This morning, when he woke up, you could just tell that he was so tired, and he didn’t sleep good last night,” Chandler Langford said. “And so today it’s different, but there’s still those moments where he still tries to make us laugh, like he’ll tell us something funny, and we’ll be like, ‘Oh, Tucker, you’re so funny.’ And he’ll be like, ‘No, you’re funny,’”
Tucker, the story teller
On a good day, Tucker is a go-getter. He’ll want to push himself out of his bedroom in his wheelchair and dream up new ways to use his remote control dump truck. On hard days, he wants to be carried to the living room and needs help with blisters.
Almost every day, Tucker is a story teller.
“He’ll be telling a made up story about something that’s in his mind. And we’re like, ‘Where did you learn that from?’ And he just kind of giggles,” Chandler Langford said.
Tucker also loves going to school and seeing his friends. At school, he is loved and well known, his mom said. People know him as a kid who is excellent at reading emotions and a kid who, sometimes, needs a little help getting “hyped up.”
School, of course, has been an excellent place for Tucker and his family to spread awareness of butterfly skin.
“I want other kids to not be afraid, to ask questions about it, and be able to talk about it,” Chandler Langford said.
Tucker’s family often shares stories about how his life looks dramatically different from other three-year-olds.
Summers can be particularly difficult. Tucker likes to go outside and play, his mom said, but there are only certain times he can, since the heat can damage his skin.
His parents have to plan outdoor family activities on the rare “cooler” summer days, she said.
“I want Tucker to be able to enjoy his life like any other child. So whatever we have to do to make him be able to do things that other kids do, we will adapt those things for him,” Chandler Langford said.
Thankfully, Chandler Langford said, she has an amazing support system. She and her husband have grown closer through hardships and are surrounded by family and friends who are always there to help, she said.
But sometimes, they can’t stop the tears from flowing.
“There are definitely those moments where, if I’m not doing anything, then my mind kind of wanders down that spiral, and it gets to me, where I start crying,” Chandler Langford said. “And same with my husband… because we’re still trying to process everything.”
Outpouring of community support
As of Thursday afternoon, organizers of a parade for Tucker anticipate around 300-500 people participating to show their support.
People will drive different kinds of vehicles, including construction vehicles, jeeps, motorcycles, hot rods, and others along the parade route, which passes by Tucker’s Kansas City home.
Due to such a large interest, organizers had to move the location of the parade to accommodate as many people as possible. A staging area will be set up Saturday in the northwest parking lot of Metro North Crossing at Barry Road and 169 Highway.
Staging begins at 9:45 a.m. and the parade will start at 10:30 a.m., organizers said.
The parade got a large following after the Kansas City Fire Department’s Station 10 posted about it on their social media.
Chandler Langford said the support has been overwhelming.
“A lot of people ask me how he’s doing, and I’m like, ‘He’s happy, but I don’t think he really understands, like, what’s going on with him, because he’s so young,’” Chandler Langford said.
Tucker’s family has decided to stick to a saying they picked up during his long stay at the hospital, “A happy heart makes a happy Tucker.”
“Now at home, whenever he gets upset, we’re like, okay, ‘A happy heart makes a happy Tucker,’ and he kind of calms down, and breathes and relaxes,” Chandler Langford said.
For now, the family’s taking it day by day and hour by hour, Chandler Langford said. They’re trying to add as much fun as possible to their routines, she said, and love deeply through pain.
“I know Tucker’s going to have a great time on Saturday. He’s heard us talk about it, but I don’t think he fully understands what’s to come Saturday for him,” Chandler Langford said.
This story was originally published October 10, 2025 at 6:00 AM.
