CLEVELAND — In many ways, Silas Oliver is a typical, rambunctious 7-year-old boy.
But Silas has spent much of his life in the hospital. He’s had more than 40 surgeries and countless procedures.
When he was just four months old, doctors diagnosed him with intestinal malrotation.
“His stomach was flipped upside down,” said Silas’ mother, Nicole Oliver. “It was shifted to like the left side of his body — his intestine, one large (intestine) was bunched up to the left side and his small (intestine) was bunched up to the right side. And that’s kind of where his journey started.”
Nicole said Silas was still having other health issues, but for years he was “Mystery Diagnosed.” In 2019, doctors discovered that he has a genetic mutation called KMT2B and “after that, everything was different.”
KMT2B is rare. A scientific paper published in 2018 found only 39 cases of the mutation. It affects Silas’ muscle and joint function, his brain and his organs. Essentially, it takes over your whole body. There is no cure.
“Eventually, everything will just kind of shut down,” said Nicole. Doctors told her they could put Silas on hospice, but Nicole was and still is determined, advocating for her son every step of the way.
“As long as there’s a breath in me, I’m gonna get answers to what’s wrong with my child because this doesn’t make sense,” Nicole said.
According to his diagnosis, Silas would not be able to talk, nor would he be able to walk, but Silas is pushing through.
“The will that he has to live is amazing. He is literally the light of our house. It amazes me — everything that he’s been through and he keeps going,” Nicole said.
Nicole said she and her husband are now focusing on improving Silas’ quality of life.
“Does it get easier? No. But to know that we’re giving him a childhood or at least trying to and getting him everything that he needs. Last year, we got a ramp on the house. He got approved for his power wheelchair,” Nicole said.
And early this year, through the generosity of others on GoFundMe, The Olivers were able to get a wheelchair-accessible van.
“I balled my eyes out when we went to the dealership. I’m not even gonna lie. It was crazy because that was something that I didn’t think we would ever get,” Nicole said.
That van will help their family cherish every moment of Silas, and help him cherish every moment of being a kid.
The GoFundMe is still active as they are working on getting Silas every adaptable item they can to help him have some independence as they navigate his treatment.
