Every day, Amanda Krejce thinks about what her son's future will hold.
Will he be able to sit by his first birthday? What will the seizures do to his cognitive development? Will he be able to smile or reach for toys again like he used to at four months?
Wyatt Krejce, a 7-month-old Woodbury boy, is suffering from a rare genetic condition called cardiofaciocutaneous (CFC) syndrome that affects the heart, facial features, skin, ability to feed normally, growth and development.
Family and friends of Amanda and Corey Krejce are holding a benefit Saturday, Sept. 8, to help them with medical expenses and lost wages that have accrued since Wyatt has been in and out of the hospital since he was born in mid-January.
"It's really tough because he's a really calm, content baby," Amanda Krejce said. "I don't know if that's his personality, the condition with seizures or all the different medication."
When Amanda Krejce was pregnant, she said she knew right away something was wrong.
But it wasn't until Wyatt was 3 months old that genetic testing was done to rule out Noonan Syndrome, a disease that causes abnormal development in many parts of the body, or any other common conditions.
The family had to wait another 12 weeks to get the diagnosis that Wyatt has CFC.
"He's 7 months, but developmentally he's at about six weeks," Amanda Krejce said. "He doesn't hold his head up; he doesn't really do a whole lot."
Only 200 to 300 cases of CFC have been reported worldwide, according to the CFC International nonprofit organization.
"There isn't a whole lot of medical literature about CFC because it's so rare," Amanda Krejce said. "We have to deal with each symptom as it presents."
Children with CFC syndrome may have certain features at birth or later in childhood that suggest the diagnosis.
Wyatt's symptoms include droopy eyelids, low muscle tone and an enlarged heart. He also experiences about six to eight seizures a day.
"It's pretty brutal to watch," Corey Krejce said.
In addition to the physical features of CFC, Wyatt has been having trouble swallowing and taking oral medication.
When the family took him to Children's Hospital in July, they didn't expect to be there for an entire month.
Amanda Krejce said he originally went in for medication changes for his seizures, but he was vomiting and wasn't tolerating his medications so a gastrostomy was necessary to put in a feeding tube.
"We ended up staying 31 days," she said.
After the surgery, Wyatt had so many seizures that his incision opened up, forcing another emergency surgery.
"It took a while after that second surgery for him to heal," she said.
Between Amanda and Corey, the couple took shifts to stay with Wyatt at the hospital and go home to take care of their other 3-year-old daughter Lyla.
After three weeks at the hospital, Lyla asked her father, "Is this where Wyatt lives now?" he said.
"It's hard not feeling like we're giving each of them enough attention," Amanda Krejce said, tearing up.
Because CFC is genetic, the Krejces did testing on the entire family and didn't find any signs of the disease.
Corey, 30, and Amanda, 32, said it was frustrating to learn that even though they did everything by the book and took care of the pregnancy, Wyatt was born with the disease.
The hardest part, she said, is not knowing what the seizures will do to Wyatt's neurological state, or if the different medications he's been trying will ever work.
"It makes me cry every day," she said. "It's hard."
What the family has been doing, however, is everything they can to give Wyatt the best possible outcome.
"We've always got hope," Amanda Krejce said. "There is no shortage of love in this household."
The Saturday benefit will be held from 3-9 p.m. at Dugarel's Burgers and Wings in Hastings.
"A Wish for Wyatt," will include a family-friendly spaghetti dinner from 3-6 p.m. with games for kids. Tickets are $10 for adults and $5 for kids. Children under 3 are free.
There will be a beer bash for those 21 years and older from 5-9 p.m. Admission is a $15 wristband. There will also be raffles and a bake sale.
"It's just been great how many people have reached out and wanted to help," Amanda Krejce said. "He's got a lot of people praying for him."
As she held Wyatt close, she looked into his slanting eyes and said:
"He's such a sweet boy. Just really unlucky."
For details on the benefit, email email@example.com or call Meghan Delgado at 612-670-3996.