Funds Being Raised for Crystal Lake Teen Who Will Undergo High-Risk Surgery

Photo credit: GoFundMePage

The community is pitching in to help support a Crystal Lake family facing financial difficulties as their teenage daughter has dealt with years of medical problems and underwent countless surgeries.

Leroy and Beth Kotecki are planning to travel to Boston later this month so their youngest daughter, Emma, 16, can undergo yet another surgery, which is called Fontan Reconstruction and will help address issues from an earlier surgery. Emma has Jacobsen's syndrome, which is a rare chromosome disorder that affects only 100 people worldwide, according to a GoFundMe page set up to raise funds for the Kotecki family.

Because of the disorder, Emma has undergone several surgeries. She also has a bleeding disorder called Paris-Trousseau syndrome, which causes a lifelong risk of abnormal bleeding. This disorder complicates matters as it means Emma is at a high-risk of serious bleeding during operation.

In 2003, Emma underwent an operation called a Fontan procedure, which, according to the GoFundMe page, is meant to be a "big repair." It is an operation for children who have abnormal hearts and cannot have their hearts repaired with two pumping ventricles. She was diagnosed with cirrhosis of the liver as a result of the surgery and now cardiologists believe she needs the Fontan reconstruction to slow down further damage of her liver.

Emma's doctors have referred her to Boston Children's Hospital to undergo this major surgery on May 4, according to the GoFundMe page, which has brought in nearly $24,000 as of Tuesday. The family will travel to Boston on April 28 to begin pre-surgical testing.

"It is an open heart surgery and Emma will need to go on heart-lung bypass. This is a very complex surgery in addition to her HIGH risk of serious bleeding due to her Paris-Trousseau platelet disorder," Cathi Neumann, a friend of the family, wrote on the GoFundMe page. "Her doctors here in Illinois don't feel like they can tackle this one so the family has been referred to a physician in Boston."

The family will need to stay in Boston for 30 days.

On top of Emma's medical conditions, the Kotecki family is also looking at the best course of treatment for their 17-year-old son, Jacob, who has been diagnosed with cognitive impairment and autism. He has the developmental age of a 6 year old, according to the GoFundMe page.

"Once puberty arrived for Jake, his sweet demeanor took a radical turn towards anger outbursts. He means no harm, yet has these emotional outbursts have landed him in inpatient care 8 times over the last 3 years. Each stay was approximately a week long or more," Neumann wrote on the GoFundMe page. "Emotionally being 6 years old, these events left him scared and confused."

As the family still works to find the right course of treatment, they are hoping to bring in a home helper for 25 to 30 hours a week to help with Jacob, according to the GoFundMe page. Beth had to leave her job two years ago as a pediatric nurse to stay home and take care of the daily needs of her children.

"She needed the income, yet also needed to be available at the drop of a hat to respond to the daily needs at school or home that arise with her children," Neumann said.

"(Jacob) often is sent home from school due to his outbursts. With LeRoy at work, this becomes very challenging for Beth to manage by herself," Neumann said.

This will be particularly difficult once the family returns from Boston and as Emma is recovering from her surgery.

Neumann started the GoFundMe page to help her friends who "have never asked for a cent" and are "humble and hard working."

"We see them, see their struggles and want to come along side them so that they can not worry about how they don't have the MONEY for any of this," Neumann wrote. "And they can instead use their ENERGY to focus on loving their daughter and son as they prepare for this very high risk surgery."

To donate, visit the GoFundMe page.