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Kindergartner to receive gift of kidney from mother

The Heintz family has lived between New Richmond and Hammond for about three years. (from left) Elliot, Polly, Dan and Owen. Photo by Laura Kruse

Five-year-old Owen Heintz will have a big day soon.

His day will have nothing to do with Halloween, school projects or new toys, but he did get a present of sorts from his mom, Polly Heintz.

Polly is set to give Owen one of her kidneys. The surgery was planned for Oct. 29 but was delayed because Owen had a slight fever.

The journey from being a healthy, active boy to virtual kidney shut-down took about three years for Owen.

When he was two, his face got puffy so Polly and Owen's dad, Dan Heintz, took him to the doctor. Initially, Owen was misdiagnosed with allergies.

After a few days on medication without any results, Owen was taken back to the doctor. This time his parents were armed with information on Nephrotic Syndrome, which he was diagnosed with.

Owen was admitted to the hospital after that, Dan said. After nine long weeks in the hospital without solid results, Owen's kidneys were tested. He was found to have Focal segmental glomerulosclerosis (FSGS).

FSGS is a disease that attacks tiny units within the kidney where blood is cleaned, according to the National Kidney and Urologic Disease Information Clearinghouse. Causes are usually unknown. Children between one-and-a-half and five are most at risk, and boys get it twice as often as girls.

Symptoms include swelling, tiredness, irritability, decreased appetite and paleness.

Dan summarized that Owen's kidneys kept bad stuff in his body but let out good stuff, like protein to help him grow. Owen's kidneys were maintained with medication until this fall.

Owen's wish

Owen joined the other kids at St. Croix Central Elementary in Jodie Falde's kindergarten class for the first day of school on Sept. 3.

The day after, Owen went to the hospital for a five-day stay. His condition was worsening.

Dan said he asked Owen what he wanted the most. The only thing Dan could get out of his young son was he wanted to go to kindergarten and learn to read.

"He wanted to go to school," Dan said.

That message passed from person to person until it reached the Elementary School.

Kim Nielsen suggested to Joanne Sanders that someone should make a video for Owen so he could still be part of kindergarten. Sanders then passed the message to Librarian Amanda Olson, who told the High School Media Club about the project.

"I thought it was a perfect project for them," Olson said. "The kids were all for it."

The Media Club was started by Olson about three years ago. They have different projects throughout the year relating to books, media and technology, she explained. Making DVDs for Owen has been their biggest undertaking so far.

Once the club was on board, brainstorming began. They decided they wanted to tape a typical day of kindergarten for Owen to watch whenever he felt like he was missing out.

Before they could do it, Neilsen called Olson about the Elementary Reading and Pep Rally for Homecoming Friday. Olson said she rounded up some of the kids in the club and headed to the Elementary to tape the festivities.

The crew caught big football players sitting in small chairs reading stories to Falde's class, carefully showing the pictures. They documented the whole school sitting in the gym yelling along with the cheerleaders and covering their ears while the pep band played, all for Owen to see.

That night, Olson quickly edited all the footage into a 15 minute DVD. She said she wanted Owen to experience Homecoming as close to the actual day as possible.

Meanwhile, Owen was in the hospital again. This visit lasted a week.

Polly said they didn't expect the video. She said Owen watched and liked the movie.

"He wanted to see the kids. He liked seeing his friends," she said. "He's going to appreciate this more when he's in the hospital."

The Media Club was thrilled with the opportunity to do something for Owen.

"When you hear of things like this, you can't usually do anything about it," said club member Heather Helmer. "We got to do something for him."

Her sister and fellow club member Cassie agreed. "I felt so bad but so motivated," she said.

Since the Homecoming video, the club has made another movie, which Owen hasn't seen yet. This DVD took on their initial idea of documenting a typical day in kindergarten.

Club members said they made sure to get the things they remembered from kindergarten, like nap time and recess, on film. They all stepped up to learn new skills, like videography and film editing, to make the movie for Owen.

"I would definitely do it again," said Alisha Hancock.

Owen's parents said the support they have gotten from the school has been "outstanding."

"They've been making him feel like he's part of the school," Dan said.

Principal Steve Sanders has offered to tutor Owen, and Falde's class has asked to take a field trip to the Heintz's house, Polly said.

Polly said she went to Falde's class to talk to the kids about Owen's surgery.

"They had questions and a lot of their own stories," Polly said.

Dan said they appreciate everything Falde has done.

"She's been great. She doesn't single him out but understands that he has needs," he said.

Owen's journey

Since leaving the hospital after Homecoming, Owen has been going to kindergarten for half days. The other half of the day he goes to the hospital.

"He has been having dialysis four days a week for four hours at a time," said Dan. Owen also gets hemoglobin transfusions.

Polly said Owen gets tired more quickly than other boys his age. However, after getting dialysis and hemoglobin, his energy level obviously improves, she said.

On Monday, only days before surgery, Owen seemed busier playing swords with his brother, Elliot, 3, than worrying about the hospital.

Dan and Polly expect Owen to be in the hospital until around Christmas. Polly will spend two to three days there while recovering from her own surgery.

Because they don't know what led to Owen's FSGS, doctors aren't sure if his new kidney will be infected too. It's estimated they'll know if the surgery succeeds within two weeks of the transplant.

Even if the FSGS does infiltrate Polly's kidney, Owen will get time out of the kidney.

Helping the family

Since Owen's diagnosis, a lot of their family and friends have been asking how they can help the family, Dan said.

"We tell them to give blood and be registered organ donors," Dan said.

Every time they take Owen in for a transfusion or dialysis session, they see kids needing the same vital fluids.

"You don't realize it until you know someone who needs it," he said.

The American Red Cross has several blood drives scheduled in the area in the next month. There is a drive on Nov. 11 from 1-7 p.m. at Christ Lutheran Church, 510 Germain Street in Somerset and on Nov. 26 from 8-1 p.m. at the Roberts Park Building.

Owen's family has started a CaringBridge Web site for him at /visit/owenheintz.