By Starrla Cray
WINSTED, MN Winsted natives Gregg Kohler and Jessica Fiecke have had some hard moments since their daughter was born with Down syndrome in March 2013, but each time they see Sophie’s smiling face, those moments are also filled with joy.
“She’s so happy,” Jessica said. “She loves music, especially ‘Twinkle Twinkle,’ and she loves [her big brother] Elliott. They play so well together.”
Jessica said that when she wakes up and sees Sophie each morning, it’s impossible to have a bad day.
The circumstances of the past year-and-a-half have been far from trouble-free, however.
Jessica (a 2005 graduate of Howard Lake-Waverly-Winsted High School) and Gregg (a 2001 graduate of Lester Prairie High School) found out that their daughter would likely have Down syndrome through a screening test when Jessica was 11 weeks pregnant.
“It was one of the random tests they offer,” Jessica recalled. “I did the test with Elliott, and it never crossed my mind.”
At that time, doctors also discovered that Sophie had a heart defect, but they couldn’t determine the severity until nine weeks later.
“We didn’t tell a lot of people, because we didn’t have answers yet,” Jessica said. “We were scared; we cried a lot.”
Surgery on a tiny heart
After the 20-week ultrasound, when Sophie’s heart had grown to the size of a quarter, doctors were able to diagnose an atrioventricular (AV) canal defect that would eventually require surgery.
Sophie was born via Cesarean section the end of March, weighing 4 pounds, 6 ounces. In order to give her the best chance of success during heart surgery, doctors waited until she was 6 months old and weighed almost 10 pounds.
She now weighs about 18 pounds, and uses a feeding tube to drink and to take medications.
“She’s able to sit, but she’s not crawling or standing yet,” Jessica said.
Sophie regularly does physical and occupational therapy through a Minnesota Department of Education program called “Help Me Grow.” She started at the Howard Lake-Waverly-Winsted School District, and is now involved with the program at the Waconia School District. (Her family moved to Waconia last November.)
“They track goals and make note of her progress,” Jessica said.
Current goals for Sophie include the ability to crawl by Thanksgiving, and the ability to walk by her second birthday.
While Gregg and Jessica are at their jobs during the day, Sophie and her brother, Elliott, attend a home daycare in Waconia.
Last winter, however, Sophie and her family spent a great deal of time at doctor’s appointments and at the hospital. Sophie had pneumonia five times, and continues to struggle with respiratory issues.
“Things really haven’t calmed down since she was born,” Jessica said.
Throughout this time, Jessica and Gregg have been grateful for the support of their parents, Mary and Roger Fiecke; and Donna and Douglas “Spud” Kohler.
They also appreciate their friends, who are organizing a benefit in Sophie’s honor Saturday, June 28 at the Blue Note Ballroom in Winsted.
“The name of the event is Sophie’s ‘fun-raiser.’ . . . [Gregg and Jessica] are so fun and full of life, and it trickles down to their kids. So, we thought that the name fit pretty well,” organizer Emily Long said.
To learn more about the benefit, contact Long at (612) 987-6786 or email@example.com; or JoAnn Gatz at (763) 227-3374 or firstname.lastname@example.org.
‘Fun-raiser’ in Winsted Saturday, June 28
A benefit for Sophie Kohler (daughter of Gregg Kohler and Jessica Fiecke) will take place in Winsted Saturday, June 28.
• Contact For more information, to donate items to the silent auction or bake sale, or to pre-register for the basketball or bean bag toss tournaments, contact Emily Long at (612) 987-6786 or email@example.com; or JoAnn Gatz at (763) 227-3374 or firstname.lastname@example.org.
• Basketball tournament Three-on-three, starting at 9 a.m. at the Winsted basketball courts by Holy Trinity’s football field. Cost is $30 per team. Register by 8:30 a.m. that day.
• Bake sale 1 p.m. at the Blue Note Ballroom.
• Bean bag tourney 1 p.m. (when the basketball tournament ends). Cost is $20 per team. Register at the Blue Note by noon that day.
• Children’s games/face painting 4 p.m. at the Blue Note.
• Silent auction 4 to 7 p.m. at the Blue Note.
• Spaghetti Dinner 5 to 8 p.m. at the Blue Note. Cost is $8 per person.
• Entertainment by DJ Craig 9 p.m. at the Blue Note.
• Donations Monetary donations can be sent to: “Sophie” at Security Bank & Trust Co., 110 1st St. N., PO Box 130, Winsted, MN 55395.
What is Down syndrome?
According to the Mayo Clinic, Down syndrome typically occurs when a child has an extra copy of chromosome 21.
It’s generally not inherited, and is instead caused by improper cell division during the development of the egg, sperm, or embryo.
About half of children with Down syndrome are born with some type of heart defect. They are also at risk for other health conditions throughout their lives.
Despite challenges, people with Down syndrome can still have fulfilling lives. The Mayo Clinic reports that most live with their families or independently, go to mainstream schools, read and write, and have jobs. (www.mayoclinic.org)