The Joneses, of Lee’s Summit, help Aidan with his reading, they play games and watch videos with him, and they’ve taken him to Disney World.
Aidan’s parents also are doing what they can to make sure he has a wonderful adulthood — by raising about $77,000 in the last three years for the Cystic Fibrosis Foundation.
Aidan was diagnosed with cystic fibrosis, a life-shortening disease that affects the lungs and the digestive system, on April 8, 2005, just after he turned 2 years old.
Almost immediately, the Joneses began to raise money for the foundation, which funds research. The Joneses will be raising money again today in the foundation’s Great Strides walk, which begins at 9 a.m. at Shawnee Mission Park. The foundation also will have a Great Strides walk at 8 a.m. Sunday at Zona Rosa.
Most of the money for the foundation is raised not from corporations but from families such as the Joneses, said Gregory Alejos, executive director of the Cystic Fibrosis Foundation’s Heart of America Chapter.
“We have very committed families,” Alejos said.
With only about six weeks between Aidan’s diagnosis and the 2005 walk, Melissa and Eric Jones raised about $7,000 for the foundation.
“I felt like I was doing something,” Eric Jones said.
In the years since, the Joneses have enlisted family and friends in the Kansas City area, St. Louis, Los Angeles, Portland, Ore., and Ann Arbor, Mich., to hold fundraisers as well as donate through the Great Stride walks.
There have been sizable collections — such as $3,500 last year from Raytown South Middle School where Melissa Jones taught art. And this year, about $3,500 is being raised through Stepp & Rothwell Inc., the Overland Park firm where Eric Jones works as a financial planner. The company donates $2 for every dollar an employee donates.
Most of the money, the Joneses said, comes from small donations, including restaurants willing to sponsor fundraisers and give a portion of sales.
“You just have to ask,” Melissa Jones said.
The Joneses do have an e-mail “blast list” of 200 people, but they say they do not obsess about raising money. They want to give and enjoy Aidan’s childhood.
At home one recent evening, Aidan, 41 inches tall and 37 pounds, scampered across the living room to grab what he wanted from a basket brimming with cars and action figures. Close by was a breathing machine that Aidan uses twice a day to clear mucus from his lungs.
Earlier in the evening, Aidan grabbed three enzyme pills, something he must take to be able to eat anything with fat or protein. They’re three of the 30 pills he takes each day.
“Why do you take the pills, Aidan?” Melissa Jones asks.
“Because,” he says in a loud and precise voice. “I have cystic fibrosis.”
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