A CT couple learned their baby’s diagnosis. ‘We are walking in a minefield for the rest of his life’
The Connecticut mom said: "We aren’t able to look more than one step in front of us. His care plan can change, or it can never change. It depends on how he does.”
A young Connecticut couple brought their second child into the world in October – baby boy Evan.
The Bristol mom and dad, Monica Wislocki and Teddy Brechun, said Evan was born with a rare genetic disease called Tuberous Sclerosis Complex – which is a disorder that causes noncancerous tumors to form in various organs, most commonly in the brain, heart, kidneys, skin, and lungs.
It was unexpected news.
“I had a very uncomplicated pregnancy with him,” Wislocki said. “When he was born, he had a heart murmur. I was a little shocked. After five weeks, I went to the cardiologist, and they couldn’t hear the heart murmur.”
However, they then got the diagnosis: Evan had three tumors in his heart and Evan has TSC.
“I thought this was another ‘cross off the list’ type appointment and everything would be back normal,” Wislocki said.
“My fiancé and I were lost in what to do. She threw so much info at us,” Wislocki said of speaking to the doctor. “All I could hear was he had three tumors in the right ventricle. The doctor was still talking but I was still 15 words back. We were a little lost from there and didn’t know what to do.”
Next up was a neurological consultation where there was Evan’s first EKG as well as an MRI on his brain and abdomen. The EKG images on the brain weren’t clear because Evan wasn’t sedated, his mom said.
“We learned to be on high alert to watch for anything abnormal because seizures are common with TSC,” Wislocki said. “Every week since he’s been born, he’s had one if not three doctor’s appointments.”
The family will make regular trips to Cincinnati for specialty care.
“One of the hardest things about TSC is tumors can grow in vital organs,” Wislocki said. “We are walking in a minefield for the rest of his life. We have avoided seizures to date. It’s also the leading cause of autism that can pop up at any time.”
Wislocki said she’s learned that no TSC patients are the same. She’s reached out to other TSC moms and each of their stories would be different.
“He rolled over for the first-time last week and it was so exciting to see him do something normal,” Wislocki said. “He’s doing the things he needs to do. We aren’t able to look more than one step in front of us. His care plan can change, or it can never change. It depends on how he does.”
Wislocki, 27, is a lifelong Bristol resident. She is a 2014 Bristol Eastern High School graduate. Teddy Brechun, 26, is a 2015 Southington High School graduate but he grew up in New Britain.
The couple has been together for seven years and has a son Theo, who recently turned 5. Brechun works for an aerospace company and Wislocki works for a chiropractic company.
“It’s kind of hard to put into words the last few months,” Wislocki said. “We are learning how to navigate a rare disease that there’s not a lot of research on…There’s a level of adjustment having a newborn. This is a whole new level with the stress of medical appointments.”
Wislocki’s friend and co-worker Taylor Walerysiak offered to set up a fundraiser for the couple on multiple occasions, but the couple resisted until last week when Walerysiak was cleared to set up a GoFundMe account on Jan. 9.
The effort has already risen just shy of $7,000 Friday, with a goal of $20,000.
“It’s tricky watching people you love going through tough times and you have no control over the situation,” Walerysiak said. “Monica and Teddy don’t want to ask for anything, but I figured this would be the best way to get them comfort and support.”
“I brought this up a couple of months ago and it was on the table,” she added. “Trips and treatments added up and eventually Monica said she would take us up on it. At that point, I knew, we really needed to help them.”
The couple resisted because they are private people who don’t show their children on social media.
Walerysiak, who grew up in West Hartford, has known the couple for just shy of two years but has developed a close connection with Monica.
“They are thankful for the response from the GoFundMe page,” Walerysiak said. “She is starting to feel the effects of the community coming together. It has powerful energy. When you need it, the community is there.”
“I’m floored by the response,” she added. “It’s a hard world and seeing this gives me hope. Monica and her family are important to me. I’m blessed to have friends like that. She inspires me.”
“Taylor wanted to do the fundraiser to give us one less thing to worry about,” Wislocki said. “I’m not the best at asking for help. We got into a clinical study at Cincinnati Children’s Hospital. We are going to travel there every month until he is 2. We want to be able to give him the top care and that hospital has the top doctors for this condition. Our first flight there was $600. So, this money will help.”
In addition to the travel, the medical bills will pile up for the couple. To see the effort, visit: gofundme.com/f/help-the-brechun-family-fight-for-evan.