Colton WareFacts about Hirschsprung’s
It’s a condition a person is born with.It occurs in 1 in every 5,000 births, more often in males.The earlier it is diagnosed, the better chance surgery can be performed before the colon ruptures, which could be life-threatening.Symptoms include absence of a bowel movement in the first 48 hours of life, distension of the abdomen, vomiting, fever and diarrhea.Source: nationwidechildrens.org
From watching 5-year-old Colton Ware wrestle with his 4-year-old brother Easton, he seems like a completely normal and boisterous kindergartner.
His favorite superheroes are Spiderman and Ironman. He likes to play Mario Cart, and he vehemently denies having multiple girlfriends in his class at school, though his dad Austin Ware teases him otherwise.
You’d never guess that Colton’s spent the majority of his life in terrible pain.
At four days old, he was rushed to the hospital, his infant skin a terrifying shade of purple in his septic state. Shortly after, he was diagnosed with a rare disease called Hirschsprung’s.
“We knew something was wrong from the get-go,” said Austin Ware, explaining that Colton wasn’t able to pass any stool, even as an infant.
According to the Mayo Clinic, Hirschsprung’s is a disease of the large intestine that makes it difficult or impossible to pass stool, caused by missing nerve cells in the muscle of the colon. Mild cases may not be detected until later childhood, but in Colton’s case, who was also born without a rectum, his condition was severe.
From then on, Colton underwent several surgeries as well as a difficult procedure performed multiple times a day by his father, involving inserting a tube into Colton’s colon to help him have a bowel movement.
“Just in the past year he’s had to be in the hospital 10 times,” said Austin Ware.
Today, Colton only has 25 to 30 percent of his colon, his father added. Colton has to be careful of what he eats and wear pull-ups to his kindergarten class, just in case.
“It’s been hell,” Colton’s grandmother Cynthia Cole said of the pain, infections and medical treatments the 5-year-old has experienced. “He doesn’t know any other life except pain. But Colton is just magical, his little smile. He perseveres, you know?”
Austin Ware stopped working in order to care for Colton, so the family subsists on Colton’s stepmom Lindsey Ware’s preschool teacher salary, Cole said.
In an effort to raise funds for the family, as well as awareness of this rare disease, she launched a gofundme.com campaign that has garnered more than $15,000 from 125-plus donors from all over the world.
Cole also created a Facebook page following Colton’s story that now has more than 2,000 followers.
“I thought, I’ve got to do something. There’s just not enough people who know about this,” Cole said. “We’ve seen just how many children are suffering and a lot of small communities don’t know what to do.”
Cole said she often fields questions from other families who are experiencing Hirschsprung’s.
“A lot of families come to us for help because they don’t know what to do,” she said. “Right now there’s not enough research or knowledge.”
Fortunately, in recent months, things have looked up for Colton. In the spring of this year, he underwent a procedure to insert a tube into his colon, with the opening – or port – visible on the outside of his stomach. Now, he has to irrigate his bowels each night by filling up a large syringe with saline solution and other medicines and pumping it into the tube, which is connected to his colon.
It’s a much simpler procedure than the one his father used to help him with, and Colton can do it on his own. He even has superhero-themed skin barriers to wear around the tube’s opening.
“Since he’s had his surgery, [things are] so much better,” Austin Ware said.
When Cole posted on Colton’s Facebook page that his birthday was coming up, the Wares’ mailbox was flooded with birthday cards and gifts.
“He’s definitely an inspiration to a lot of people around the world,” she said with pride in her voice.
But challenges are still ahead. Though Colton is doing much better after his most recent surgery, Hirschsprung’s doesn’t have a cure. Many families who are experiencing its effects are hoping for further research to be done and strides to be made in stem cell research, to possibly grow the nerve cells kids like Colton need in their colon.
To find out more about Hirschsprung’s and Colton’s story, or to contribute to the family, visit gofundme.com/coltonware or facebook.com/coltonsware.