Like other 3-year-olds, Dustin Heatherly enjoys playing outside or having a book read to him.
But unlike other kids his age, Dustin was born with a severe kidney disease — having the ability to use only a portion of one kidney — that threatens his life.
To get genetic testing to determine how effective a kidney transplant would be for the child, Dustin’s family needed money they didn’t have.
While trying to raise money for the test recently, the family got an unexpected hand.
Don Jorgensen is a candidate for one of two house seats in Legislative District 26.
He heard about the effort to raise money for Dustin through fellow LD-26 Democratic candidate Nancy Young Wright.
The two candidates collected $3,800 for the procedure, which they gave to the Heatherly family last Thursday.
“It didn’t take very long to raise the money,” Jorgensen said.
Dustin’s ailment — autosomal dominant polycystic kidney disease — is transmitted genetically. Approximately 1 in 1,000 people carry the trait for the disease, according to WebMD.
A genetic test is necessary to determine the severity of Dustin’s condition. If the test were found in his favor, a kidney transplant would help clear up the problem. If not, a transplant would only stave off the disease for a few years.
The Heatherly family is on the Arizona Health Care Cost Containment System, the state’s version of Medicaid. The state insurance will cover the transplant operation, but not the cost of the testing he needs prior to the surgery.
This puts the family in what father Wade Heatherly calls a catch-22.
Heathery, an Army veteran who served in Kosovo, recently received his degree to work in respiratory therapy, but getting a job means he probably will earn too much to qualify for state medical coverage. If he doesn’t get a job, many of the medical procedures will be covered, but he will be unable to support his family.
The family resides in Catalina and has held a community fundraiser and sold their vehicle, but it still wasn’t enough to cover all of Dustin’s medical bills.
Living on food stamps and a few hundred dollars a month, they now drive around in a Chevy Van a family member gave them.
Jorgensen last week pointed to the Heatherlys’ situation as he described the need to reform healthcare in Arizona.
“We decided this is an example of healthcare needs in Arizona,” he said.
Having every child in the state covered, as well as holding public agencies and the private sector accountable, are ways Jorgensen proposed to address the problem.
According to a Consumer Reports 2007 survey on healthcare, 49 percent overall, and 43 percent of people with insurance, said they were “somewhat” to “completely” unprepared to cope with a costly medical emergency over the coming year.
Now that they have a means of paying for the procedure, the next step for the Heatherlys is to schedule an appointment for Dustin’s genetic test for early August.
Dustin’s older brother, Tyler, has even expressed interest in donating one of his kidneys to his brother.
“Everybody’s been real supportive,” Wade Heatherly said.