Fresno family raising awareness for rare seizure disorder

FRESNO, Calif. (KFSN) -- A Fresno couple eager to welcome their new baby received a heavy diagnosis and now, while they're son is still in the hospital, they're looking for a solution.

Baby Bodie has spent the first 10 weeks of his life in the Community Regional Medical Center Neonatal Intensive Care Unit, but even before he was born, his mom, Ali, suspected something just wasn't right.

"I had a really hard pregnancy, so we knew something might be wrong, but we just couldn't figure out what," said Ali Jensen. "And I was in and out of the hospital, and then had an amniocentesis done."

Before those test results were back, Bodie came early, born at just 30 weeks along.

While he was in the NICU, they realized he was having seizures and there were even more tests.

"He was diagnosed with KCNT1, it's a rare genetic disorder that he is prone to hundreds of seizures a day, and it doesn't have a cure right now," said Ali. "It's often medicine-resistant. So we've tried different anti-seizure medicines and none have been successful so far."

The news devastated his parents.

"There's a good solid chance of him dying, and that's tough, but we're just trying to cling on to hope right now and trust trusting God that He has a plan for him and that we'll find him help," said Connor Jensen, Bodie's dad.

Soon, they were connected with the KCNT1 Epilepsy Foundation.

"They've given us hope through all of this, with clinical trials and also having other families to connect with," said Ali.

They stepped up when they found out those clinical trials may be at risk.

"I've even got to contact UC Davis, it's the Silverman Lab, very nice people, and asked how we can help," said Connor. "And so this is how it all kind of started, which was they needed help with getting us to contact our local representatives, because they had a little bit of budget cuts going on.. I posted on Instagram, if you can please, contact our local representatives."

"We're going to host a fundraiser for Bodie on his original due date," said Ali. "So it'll be an emotional day, but we're excited to bring awareness to the KCNT1 foundation."

A little baby, potentially leaving a big mark.

"At the end day, if we can use Bodie to help other families in the future," said Connor. "You know, that's what ultimate that's the ultimate sacrifice that Bodie can do. For us, it's just us trying to find him help."

The fundraiser benefiting the KCNT1 Epilepsy Foundation will be on Thursday, June 5, from 5 to 8 pm at FitnessSocial. The gym is located at 7060 N. Recreation Ave. #108, Fresno, CA.