Help sought for Crystal Lake Central teen having rare heart surgery

CRYSTAL LAKE – In less than three weeks, a Crystal Lake family will travel to Boston so their 16-year-old daughter can have reconstructive open-heart surgery to combat a rare disorder she's battled since birth.

The trip and the attached medical expenses are wearing on LeRoy and Beth Kotecki, whose two children have disabilities that require demanding medical and emotional care.

Jacob, 17, has autism, while Emma, 16, is diagnosed with Jacobsen’s syndrome, a genetic defect the U.S. National Laboratory of Medicine reports has been diagnosed in fewer than 300 children.

Seeing the family's struggle, family friend Cathi Nueman has started a GoFundMe.com account that aims to raise $40,000 for the family to cover the medical costs, as well as a 30-day stay in Boston and care for Jacob.

“We would help them out as we could as a family, but I knew we needed to do something bigger,” Nueman said. “They’re going to struggle with the emotional part alone, but could we lift the financial burden?”

In the past month, the account has raised more than $21,700.

“It’s hard to put into words what we are feeling because there is so much angst on one hand, and on the other there is so much support and generosity from family, friends and strangers,” Beth Kotecki said.

Federal data show more than 90 percent of patients with Jacobsen’s syndrome have a bleeding disorder known as Paris-Trousseau that causes a lifelong risk of abnormal bleeding and easy bruising. Heart defects also are common. Emma has both.

The Crystal Lake Central High School sophomore is among a rare subset of patients without the cognitive impairment typically associated with Jacobsen’s.

Emma will need to have reconstructive work done to repair an earlier Fontan procedure, an operation done for children who have abnormal hearts and cannot have their hearts repaired with two ventricles.

The operation connects the veins that bring back blood from the body directly into the lung arteries, according to the Fontan Registry. Post operation, the heart is used as a single ventricle that ejects blood with oxygen in the body. Blue blood, or blood without oxygen, flows passively to the lungs without being pushed by the heart.

The original surgery has caused pressure on the liver, leaving Emma with cirrhosis of the liver. Eventually, she will need a heart and liver transplant, Beth Kotecki said.

Beth, LeRoy and Emma will leave for Boston on April 28. The surgery is set for May 4.