A family from Vienna, Illinois is raising money for a genetic test to find out how to best take care of their 3-year-old.
Conner Mullins was born with encephalocele a rare neural tube defect. The Children's Hospital of Wisconsin describes it as a disorder in which the bones of the skull do not close completely.
Connor's mom Loveta Mullins said her 3-year-old wasn't expected to make it.
“Seeing my baby go through his first surgery at 3 days old to have part of his brain removed was awful,” Mullins said.
Conner has difficulty walking and talking, but doesn't have a name for his condition. A genetic test could help solve that.
“I don't know if it's easy to find out that there are other things wrong with him, but I think it would be great just to know if there is that we can get it treated before it becomes a huge issue,” Mullins said.
However, a genetic test comes at a high price and insurance isn't willing to pay for it.
"$10,000 for this test and insurance will not pay for this because they think its an elective thing, however insurance wants to put a name to what's going on with him in order to pay for things," Mullins said.
His sister Krystal Terry organized a spaghetti dinner at Vienna High School, Vienna, Illinois Saturday so they can start saving for Conner. She said medical bills are piling up for her parents who are always traveling to St. Louis to take Conner to his hospital visits.
“I hope this test leads us to what his actual condition is so that so we can prepare ourselves to support him the way he needs to be supported,” Terry said.
She said she's thankful for how supportive the community is to Conner, a little boy who's very strong.
"It just amazing that someone who's gone through so much so early and it doesn't bother him, he's happy and that's all that matters," Terry said.
Conner's sister said they raised $1800 at the dinner. His mom said they have an appointment about genetic testing in November.
Conner's family has setup a GoFundMe account to help raise money for that test. To help, click here.