3 weeks ago
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CLOVIS, Calif. (KSEE/KGPE) – A household successful Clovis is present warring for answers portion their lad fights for his beingness successful the Community Regional Medical Center Neonatal Intensive Care Unit.
At lone 2 months old, Bodie Jensen is battling an highly uncommon familial upset called KNCT1. His parents, Ali and Connor Jensen, are present trying to dispersed consciousness and urging researchers to hunt for a cure.
Ali says she had a pugnacious gestation with Bodie and had issues with polyhydramnios, meaning she had a batch of other fluid during pregnancy. Eventually, she delivered Bodie 10 weeks earlier than expected erstwhile she was conscionable 30 weeks pregnant.
Despite the premature commencement and exigency c-section, Ali and Connor were thrilled by the commencement of their son. Doctors primitively thought everything looked normal.
But, she soon recovered retired that wasn't the case.
"To person to permission the infirmary without your kid is unnatural. Like a you conscionable don't consciousness similar a parent astatine that point," Ali said.
Doctors assured her everything looked alright.
"A mates of weeks went on, and we noticed that helium was having immoderate twitches. And I had asked doctors and nurses astir it," she said.
Those twitches were seizures. She says Bodie was having 1 astir each 5 minutes.
Doctors diagnosed Bodie with the ultra-rare familial mutation KCNT, which was causing epilepsy. The KCNT1 Epilepsy Foundation reports determination are lone 3,000 known cases worldwide.
Doctors told Ali and Connor there's nary cure and nary medicine to dainty the mutation.
"As a father, you privation to conscionable assistance your child, and you privation to instrumentality that symptom distant from them. And that's thing I just, I can't do," Connor said.
Two months later, and small Bodie inactive can't travel home.
"Yeah. We're not going to springiness up connected him. What I would see adjacent calls, yeah, you know, I've seen my lad person little than 10% oxygen crook blue, airy arsenic it tin be. And I'm implicit present thinking, you know, this, this mightiness beryllium the time," they said.
That helpless feeling motivated them to bash arsenic overmuch arsenic they could to assistance not lone Bodie but besides different children diagnosed with the gene.
They're hosting a fundraiser for the KCNT1 Epilepsy Foundation this week connected June 5, Bodie's archetypal owed date. The wealth raised volition spell to the KCNT1 Epilepsy Foundation, which helps probe a cure and find treatments for kids conscionable similar Bodie.
"And astatine the extremity of the day, for us, it was, you know, like, could we marque a quality for our son? Yes. But also, tin we marque a quality for radical down the road?" Connor said.
If you'd similar to enactment successful the fundraiser and assistance donate to the foundation, the fundraiser volition beryllium from 5 p.m. to 8 p.m. connected Thursday at FitnessSocial located at 7060 N Recreation Ave, STE 108, successful Fresno.
If you'd similar to larn much astir the fundraiser, accusation tin beryllium recovered connected the pursuing flyer, connected the FitnessSocial Facebook page.
If you'd similar to donate to Bodie's GoFundMe, click here. To rise wealth for the foundation, click here.
