When Oliver Jacob Bates was born in August, he seemed like a healthy baby.
"Everything seemed perfectly fine,” his mother Justine Miller said last week from her Chatfield home.
But that belief was quickly shattered when at 5 ½ weeks old, Oliver started having seizures. The seizures started off the first of a series of hospital stays and led to the diagnosis of the rare genetic disorder, WWOX or WOREE Syndrome, that causes seizures, major delays and premature death.
“It was pretty devastating ,” Miller said of the news she and fiancé Casey Bates received.
When the geneticists called with the diagnosis, Miller said the family was told not to Google it and was asked to come in later that same day to talk about it. Unable to wait, Miller did look it up.
“It was kind of a hard pill to swallow. When you first look at it, it says premature death. Most kids don't make it to the age of 4,” she said. “When I was pregnant, we were expecting to do all of these things as a family and then having this news brought to us totally came and flipped our whole world upside.”
The family of six, Oliver has three older siblings from his parents’ previous relationships, has been on a roller coaster the last eight months.
“It’s been a big change,” Miller said. “But we are also trying to make it as normal as possible.”
It hasn’t all been lows for the family, though. Recently, Oliver reached a milestone his family was unsure he’d ever make -- a big belly laugh. The laugh came out of seemingly nowhere during Oliver’s most recent hospital stay, his mom said.
The community support that has been rallying around the family has also been a help. Last month, the family’s neighbor Megan Heim started a GoFundMe and began planning a benefit to financially help baby Oliver’s family.
“Being their neighbor, I watched her go through her pregnancy with little baby Oliver. As a mom myself, I was excited. I couldn't wait and I kept asking her when she was going to go," Heim said.
When Oliver was finally born, a day past his due date, Heim said she noticed the family was gone for a while and that they were in the hospital waiting to hear what was going on. It was during one of Oliver's recent hospitalizations that Heim decided she wanted to do something for her neighbors.
“No parent should ever have to see their child go through what their child is going through,” she said.
On Saturday, JAC's Bar & Grill in Chatfield will host the benefit Heim organized for the family. The outdoor event, from 1 - 5 p.m. Saturday, will feature walking tacos, a bake sale, a silent auction and a 50/50 raffle as well as T-shirts, bracelets, koozies and key chains for purchase.