Michael “Mickey” Kovnar was born in 1985. He attended the Milwaukee Jewish Day School, played soccer for the Milwaukee Kickers Soccer Club and began learning to play the cello at a young age.
Mickey would have been 23 years old this year. But in December 1995, at the age of 10, Mickey was diagnosed with Ewing sarcoma, a deadly form of cancer. After receiving multiple rounds of treatments, he died in 1999. He was only 13.
Today, his mother, Susie Gidan, a medical social worker at Children’s Hospital of Wisconsin in Wauwatosa, his older sister, Sarah, 26, and other family members work to continue Mickey’s legacy.
And that legacy is alive and well.
Mickey’s dying wish was to raise money to help other children who suffer from life-threatening illnesses. In fact, he was so inspired by his experience with the Make-A-Wish Foundation that he managed to raise more than $25,000 for help make other children’s wishes come true.
In 2000, the Make-A-Wish Foundation established the Michael Kovnar Spirit Award, which goes to the child who raises the most funds for the Walk & Run for Wishes. The annual Walk & Run for Wishes event will take place at the Henry Maier Festival grounds on Saturday, Aug. 22, 2009.
“It’s an honor to know that he is being remembered that way,” Gidan said.
Gidan and her daughter Sarah also worked with Children’s Hospital to establish the Michael C. Kovnar Memorial Lecture. The lecture is presented annually to medical professionals and covers different topics each year, Gidan said.
“I have worked at Children’s since 1986, and Children’s really became our second home during Mickey’s treatments. He really felt comfortable and at home (there),” she said.
The diagnosis
According to Gidan, shortly before Mickey was diagnosed, he could not go to sleep at night because he had trouble lying down. After 48 hours of similar behavior, Mickey asked to be taken to see a doctor.
“I remember as the doctor was examining Mickey that he literally flew off the table in pain at one point,” Gidan said. “The doctor asked me what had happened to him, and I had no idea.”
Mickey went through a series of tests over the next few days and it was discovered that he had metastatic disease in his vertebrae. Eventually, it was diagnosed as a Ewing sarcoma.
“It was an unbelievable experience, knowing that every step was going to lead to another step and each step you had to go through you knew it wasn’t taking you down the right path,” Gidan recalled.
Ewing sarcoma is the second-most common primary bone tumor found in children and young adults, said Dr. Meg Browning, assistant professor of pediatrics in hematology and oncology blood and marrow transplant at Medical College of Wisconsin.
“We think of it as a bone tumor, but it can occur both in bone and soft tissue,” Browning said. “The most common thing patients are presented with is pain that doesn’t go away. It usually takes a couple of months before it becomes clear that it isn’t just growing pains or a sports injury.”
According to his mother, Mickey was still playing soccer just a few weeks before his diagnosis.
“Some slow advancement has been made since the time of Mickey’s diagnosis,” Browning said, “But the current statistics are somewhere near a 55 percent survival rate among children if it is a localized disease, meaning it has not spread. If it has already spread, or if the cancer returns once it has been removed, there is a 25 to 30 percent survival rate.”
Mickey’s family knew from the beginning that his diagnosis was metastatic and the disease was spreading.
“We knew right away that there would be challenges for treatment,” Gidan said. “It was recommended that we move fast.”
Shortly after he began radiation treatment, the family had planned to visit Gidan’s family in New Orleans just before Mardi Gras.
Mickey was hospitalized the week the family had planned to leave for the trip. The doctors told Gidan that they would not be able to go.
“I just looked at him and said, ‘We’re going,'” Gidan said. “Mickey and the other kids were looking forward to that trip for so long, and Mickey wanted to go, so we went. I think that it’s important that you continue to live life, you work on the treatments and you continue and that you don’t put your life on hold while you are waiting for things to improve. You enjoy the time you have with each other, and that’s what we did.”
He received chemotherapy and radiation treatments, lost his hair early on and grew weaker as the days passed along.
Mickey continued to go to school when he could. His mother believed the support he received there and at Children’s Hospital was something Mickey needed for his mental health.
“He loved school, he loved being with his friends, even if it was just for a half a day,” Gidan said. “School gave him a sense of normalcy back in his life. School is what kids his age are supposed to be doing.”
Mickey’s wish
Shortly after Mickey’s diagnosis, he received a bone marrow transplant at Children’s Hospital. Mickey was the first child with Ewing sarcoma to have his own bone marrow used for transplantation.
Knowing that after the transplant he would not be able to get outside as much in the following summer, the Children’s Hospital staff referred him to the Make-A-Wish Foundation, where he was granted a wish.
“Mickey wanted our basement remodeled into his own retreat space, complete with cable television, because I refused to pay for cable when he was younger,” Gidan said.
Gidan’s basement was remodeled and included a new cable television, a treadmill and a pinball machine.
“The foundation helped him dream and gave him a place to escape,” Gidan said.
Mickey was so moved by his wish that in the fall of 1996, he began raising money for the Make-A-Wish Foundation’s annual Walk & Run for Wishes (At the time, the race was known as the Make-A-Wish Foundation’s Run to Fiesta).
“Mickey was so grateful for his wish being granted,” Gidan said. “He knew first-hand what it meant to a child to have their wish come true, and he would tell anyone and everyone about it.”
Mickey began asking people he knew to contribute $18 to the cause. In Hebrew, each letter also has a numerical value. The Hebrew word for “life” is equivalent to the value of the number 18.
“Mickey just wanted everyone to give what he thought was equivalent to life: to help make another child’s wish come true,” Gidan said.
In the first year, Mickey raised $3,100 for the Make-A-Wish Foundation. Supporting the foundation became the boy’s mission, Gidan said. Mickey became the youngest member on the Make-A-Wish Foundation’s Walk & Run for Wishes Steering Committee.
“He would come to the meetings, work on the walk and begin fundraising for the next year the day after the event,” recalled Patti Gorsky, president of Make-A-Wish Foundation-Wisconsin. “He had so much fun in his basement, he just wanted to share that wish with other kids, and allow their wishes to come true.”
Mickey continued his fundraising efforts throughout the final years of his life. He set up a change jar in school and formed a database on his home computer to keep track of the donations that he received for the foundation.
“This was before the age of Microsoft Excel spreadsheets, but Mickey developed a database of donors and kept track of their information all on his own,” Gidan said.
Every year, Mickey would send a handwritten letter to the people on the list, asking for their $18 donation again. Then he followed up with thank you letters.
“The year Mickey died, he had over 600 names on the database,” Gidan said. “He was such an inspiration to everyone.”
In 1999, the year he died, Mickey raised $21,000 for the Walk & Run for wishes.
“He died knowing that he had raised enough money to pay for two wishes,” Gidan said.
The legacy
Today, Gidan and her family continue to track Mickey’s database.
“Every year, we get together to stuff envelopes. Sarah writes the letters now, and we still send thank you cards. The race is in August, and Mickey would always have the letters ready to go by January of the next year. So, if we don’t have them out by the first week in February, we feel like we are behind,” Gidan said.
Gidan also serves on the Make-A-Wish Foundation board of directors and is actively involved in their fundraising efforts.
“Susie has done an amazing job of keeping Mickey’s legacy alive,” Gorsky said. “Mickey, like so many other Wish children, was courageous and wise beyond his years. His zest for life and his ambition for raising money to make other wishes come true were an inspiration to all of us at the foundation.”
