When Johnnie Murphy was 9 years old, his mom, Natalie, started to notice he didn’t seem to feel well whenever it came time to eat.
“He’d push his food around on his plate or even try to hide it,” she said. “I always chalked it up to the fact that he probably ate too much junk food and either he wasn’t hungry or it gave him a stomachache.”
It wasn’t until Johnnie’s older brother brought it to his parents’ attention that Johnnie was vomiting and having diarrhea on a semi regular basis that they realized something more serious was going on.
The Murphys sought the advice of Akron Children’s gastroenterologist John Fyda, who ran a battery of tests to determine what was wrong.
Johnnie was eventually diagnosed with Crohn’s disease, a type of irritable bowel disease that causes inflammation and attacks the digestive system. It’s often very painful and currently there is no cure.
Now 13 years old and a 7th grader at St. Paul School in North Canton, Johnnie has more than learned to live with a disease that had him wondering as a 9 year old if he was going to die.
“I still remember Johnnie coming home from Camp Oasis in Michigan, a camp for kids with Crohn’s and colitis,” said Natalie. “Johnnie informed us he had some exciting news he learned at camp – he was going to live.”
And that he has.
For the last 4 years Johnnie has participated in the Take Steps Walk for Crohn’s and Colitis, raising more than $15,000 and receiving the Kohl’s Cares for Kids award and the Youth Honored Hero award through the Crohn’s and Colitis Foundation of America.
Just this year he started his “Johnnie Cares” campaign by making and selling his own stationery.
“Johnnie created a smiley face card set he sells for $5 a pack,” said Natalie. “He found a printer in town who prints them for him. He gives half his profits to Take Steps and he’s using the other half to create goodie bags for gastroenterology patients at Children’s.”
Currently a patient of Dr. Matthew Wyneski, Johnnie is seen every 3 to 6 months in the gastroenterology department at Akron Children’s.
“Johnnie recently brought in 60 pink and blue bags for us to distribute to patients,” said Julie Keiger, a patient service rep in gastroenterology. “The bags are intended for patients who either received bad news or are undergoing a procedure.”
For Johnnie’s 13th birthday this past August he skipped having a party and instead asked his friends to bring money to shop for comfort items for the bags.
“The kids had a field day shopping,” said Natalie. “They were quite the bargain hunters.”
Johnnie makes bags for 2 age groups – 6 and under and ages 6 to 10 – with each bag valued around $5.
“They have been a huge hit with our patients,” said Julie. “It’s nice to see them smile.”
Johnnie, whose Chrohn’s disease is well controlled by medication and diet, works with the Northeast Ohio Chapter of the Crohn’s and Colitis Foundation as a peer mentor to kids who are newly diagnosed.
“Right now he’s emailing with a boy about his age from New York,” said Natalie. “He can lend an empathetic ear and advice about what’s worked for him.”
Natalie tears up when talking about her son’s amazing heart.
“Johnnie said to me he’s confident one day there will be a cure for Chrohn’s disease,” she said. “He also said he would put himself last in line for the cure because he believes there are kids who need it more than him.”
Even with Crohn’s, Johnnie has fought to have a normal life and continues to play hockey and lacrosse. He’s also on his school’s Lego league robotics team.
He recently learned that the Crohn’s and Colitis Foundation is partnering with the Disney World Half Marathon in Orlando, Fla., and now he has a new goal.
“He wants to run in this half marathon,” said Natalie. “He won’t give up on his mission to raise money to find a cure and make people’s live better. He just wants to give back.”
If you’d like to support Johnnie, his smiley face notecards sell for $5 for a pack of 6. For more information, email Natalie at firstname.lastname@example.org.