Staff Writer
Only two weeks out of her wedding dress, and days after her honeymoon, Sarah Olkkonen was told by doctors that her 11-year old daughter Julie needed a kidney transplant, fast.
“It broke my heart,” Sarah said.
Julie was diagnosed with End Stage Renal failure. Though test results are still pending, doctors believe the extensive scarring, shrunken size and 90 percent failure of Julie’s kidneys are the result of a genetic disorder called nephronophthisis.
“Julie was always smaller than other kids,” Sarah said. “I could go a couple of years without buying her new clothes.”
“(Julie also drank) unusual amounts of water. Never soda, juice or milk. When she wanted something to drink, she was adamant that she needed water.”
Sarah took Julie to doctor after doctor
“(Most doctors) pushed me in and out of their office, saying that I should be proud Julie’s a water drinker.”
When Sarah pressed physicians to test Julie for diabetes and iron deficiency, the tests came back normal.
Sarah grew up the daughter of a Coast Guardsman. The Lindsey family lived in Hawaii, Texas, Florida and Virginia before moving to Ohio.
As a single mother, the moves for Sarah continued, as she searched Ohio cities and towns for work while trying to finish a college degree.
Sarah put down roots in Galloway three years ago, and the trips to doctors continued. Again, no medical explanation could be found pinpointing the cause of Julie’s small size and intense water-cravings.
“She had no pain,” Sarah said. “(Julie’s disease was) very difficult to diagnose.”
In 2004, the usually bright fifth-grade Julie, began to show signs of deepening problems.
Julie was “run down,” Sarah said. “She couldn’t hang with the rest of the kids. She had problems focusing and staying attentive. She got real tired. It got to the point where I wouldn’t let her play with the other kids after school.”
At wits end to find the cause, and hopefully solution to her daughter’s puzzling ailments, Sarah and Julie met Dr. Julie Kalb at Children’s Hospital in 2005. Everything changed.
Unlike her experiences with doctors around the state, Kalb “really listened to me,” Sarah said.
The doctor found protein in Julie’s urine. The protein content was so high that Dr. Kalb called Sarah and told her to leave work and rush Julie in for extensive testing “that very day.”
“Ultrasound showed that Julie’s kidneys were half the size they should be, with only 10-percent function in each,” Sarah said. “I realized then that it meant Julie needed a kidney transplant right away.”
New marriage with the new diagnosis
When Sarah heard this crushing news in June 2005, her wedding ring had been on her finger only two weeks. She and her husband, John Olkkonen, had returned days earlier from their honeymoon in Miami.
John stood by Sarah and Julie in the emergency room at Children’s Hospital.
Though Julie has only known John a year and a half, she calls him Dad.
“You might expect that someone who is going through this might not stick around. But he’s been so supportive. I can’t thank him enough. He’s the dad Julie’s always looked for,” Sarah said of John, who joined the family at the most difficult point in Julie’s illness.
As a child, John was orphaned in Korea. He was later adopted and raised by a family in Michigan. He moved to Columbus to attend DeVry University, and in 2004 met Sarah in the tech department of Cardinal Health.
“I treat Julie as if she was my child,” John said. “She’s my daughter.”
John and Sarah are expecting the birth of their first child together in late- February 2006.
Ahead in the fight for Julie’s life
After Dr. Kalb’s diagnosis, “I completely informed Julie of everything,” Sarah said.
Julie’s “biggest fear is surgery.”
Sitting in a Westside Mexican restaurant, Julie, a smiling 11-year old with bright searching eyes, said, “I don’t want dialysis.”
If a kidney donor is not found in the next several months, Julie will be forced to undergo surgery to prep her body for dialysis.
“Not many people last more than five years on dialysis,” Sarah said.
“I’ve never had surgery,” Julie said, “It’s scary to me. I don’t know what it feels like to wake up from surgery. I’m kind of excited to get it done so I don’t have to get dialysis. I don’t want to be on a machine at night.
“In the third grade I got picked on a lot,” Julie said, because of her unusually small size. “The whole class picked on me except one person. His name was Gary.”
While Julie spoke, she flicked absentmindedly at the chipped pink polish on her fingernails. Sitting in a booth, her feet did not touch the floor. Both her eyeteeth are missing.
“I’m getting my adult teeth,” she said. Then, with a worried look, “It’s been a year since they’ve grown in.”
When Sarah’s family heard the diagnosis of end stage renal failure, they mobilized.
The Lindseys are experienced in coming to the aid of a sick family member. Sarah’s brother, Jeremy, 24, is mentally disabled.
“Jeremy has taught us compassion and to open our hearts to differences,” Sarah said.
Doctors told Sarah that Julie—only 4’3”—can accept a transplanted kidney from an adult.
When he heard this, Sarah and Mary’s father, retired from the Coast Guard, offered one of his kidneys. Yet, specialists rejected both his kidneys because he has a history of heart problems and “almost died,” said Sarah.
Ten other people have called to donate their kidneys to Julie, but for various reasons, all were rejected.
Now, it is a race against the clock.
Mary is heading up a campaign to find Julie a donor.
Karen Hartje, Mary’s mother-in-law is helping out with the campaign.
“Julie is an inspiration to me. She has reminded me to appreciate the little things,” said Hartje, a wheelchair-bound retired Gahanna English teacher shot in the back and paralyzed in 1979.
Julie’s great grandmother Dorothy Adams has been in contact with the Ohio Appalachian Wrestling Association who has scheduled a fundraising-slam in Zanesville this fall to benefit Julie.
“We’ve had people come out of the woodwork to give us money,” Adams said.
Julie needs $50,000 to pay for her surgery and possible dialysis, as well as an extensive list of medications.
Mary Knecht said she tried contacting Julie’s biological father to donate a kidney. He has not returned phone calls.
Several Westside schools also held bake sales and began collecting old cell phones to help pay for Julie’s surgeries.
A local restaurant, Panaderia Oaxaqueña Y Mi Pueblo Market, has donated cash. And to lift Julie’s spirits, local businessman Steve Ferry, owner of Columbus Petpals, bought tickets and backstage passes for her to meet singer and actress Hilary Duff.
In addition to support from the community, her classmates and her family, Sarah said faith in God is buttressing Julie’s spirits most. Julie attends the Church in Galloway regularly with Sarah and John.
“Prayer, church and God are getting her through this,” Sarah said. “I tell her, You never know God’s plan for us.”
Julie said, “If I don’t find a kidney soon I could be dead. I’m not ready to die yet.”
To help Julie, visit http://saving4julie.tripod.com.
