Emily’s fight, Emily’s legacy
Fourth annual ‘Donate Life’ event is Aug. 12
MANSON — Betty Sweet has helped her friend Liz Markert put on the “Emily’s Fight — Donate life” event for the past four years. This year, the two made plans to honor those who have died and donated organs by putting blue ribbons on the t-shirts.
They didn’t realize Sweet’s husband Steven Sweet would end up on that list.
“A month ago when we sat at my kitchen table and planned out the t-shirts, we never would have though Steve’s name would be on that,” Markert said. “It affects us all in a way we sometimes aren’t prepared for.”
Steve passed away in mid-July, just a few weeks before the run, Betty Sweet said.
“Steve gave his eyes, and he gave tissue and he gave bone,” she said. “He can help–I think they said up to 55 people.”
Tissue donation can help anywhere from 50 to 300 people, Markert said. These can go to burn victims, for instance.
“They have to have those skin grafts. When their whole body is burned, they can’t take from one part of the body to another,” she said. “And for another example, if someone has a mastectomy, to replace that skin from the surgery they can use tissue.”
Betty Sweet said she wanted an open casket funeral, and the Iowa Donor Network was able to make this happen.
“I said as long as it doesn’t affect his appearance, because I wanted some closure — and they assured me 100 percent that it would not,” she said.
“They explained to me for bone marrow cancer patients now, instead of painful surgery digging out cancer-laden bone marrow, now they replace the whole bone,” Sweet added. “Steve, for his medical condition I was shocked — They said his bones were so good. Of course he was a farm boy. Drank a lot of milk.”
Steve Sweet had had problems with his heart, but that didn’t affect his bones, Betty said.
The run/walk is in honor of Markert’s daughter Emily, who lived to age 32 and got to fulfill a number of her dreams thanks to multiple lung transplants.
Emily Markert was just a teenager when she was diagnosed with the lung disease in the summer of 1999 and underwent a bilobar – or partial – lung transplant. Her uncles Don and Larry Fitzgerald became living donors and gave parts of their lungs to keep her alive.
Then, in 2005, while completing her senior year at Iowa State University, Markert’s body began rejecting the transplanted lobes. She underwent a full lung transplant in early 2006 and returned to running.
She died Aug. 15, 2014, after complications, including bone and liver cancer.
Establishing the run was one of her last wishes, to spread the word about the importance of organ donation.
Markert and Sweet said they think awareness is growing. Steve Sweet said one of their friends’ son had died at age 36, and had donated his eyes.
That impacted Steve, Betty Sweet said.
“He thought that was a wonderful thing. Your eyelids are shut–who knows?” she said. “If you can help someone else see. So his corneas will be transplanted to somebody who needs them.”
And of course, their daughter Abby had been friends with Emily Markert since childhood, and knew what she had gone through.
“If that connection hadn’t been there, I doubt if we would have done that,” Betty Sweet said.
After Steve had passed, Betty Sweet was talking to another family friend at the bank, Lynn Johnson, and happened to learn her husband was a donor as well.
“It’s kind of ironic, but my husband Steve and Dean Johnson were best friends,” Sweet said. “I didn’t realize Dean was a donor.”
The Iowa Donor Network reports that only 42 percent of U.S. adults are registered as an organ donor.
When Emily got her first donation, she had to have the partial lobe transplant because the wait was so long, Liz Markert said.
“And five or six years later when Emily needed her second transplant, they told us awareness and education has grown so much that the living related lobar wasn’t as necessary,” she said. “People were getting donated organs instead. In a six-year span.”
Still, the IDN says there are nearly 600 people on the waiting list for an organ in Iowa, and over 120,000 nationwide. Twenty-one people die each day waiting for a transplant.
That’s why Emily’s fourth annual event will raise both awareness and money for the Iowa donor network.
The shirts will feature 14 blue ribbons in memory of those that have donated, or those that have been a recipient and passed.
“Then there are five green ribbons in honor of those that are living donors,” Liz Markert added. “We have three that have donated a kidney to another person, and then of course my two brothers that donated their lobes to Emily.”
All along the route there will be signs featuring sayings from Emily. The theme for the event will be “Outlive yourself.”