3 weeks ago
20
CLOVIS, Calif. (KSEE/KGPE) - Hope connected the skyline - that's what a Clovis household wants for their lad calved with a uncommon familial mutation, which is causing him to person aggregate seizures a day.
Thursday night, the household of two-month-old Bodie Jensen is organizing a fundraising lawsuit - not lone to rise money, but besides to springiness anticipation to babies similar Bodie and rise awareness.
The fundraiser was astir raising wealth and having a small spot of amusive - the fundraiser hosted astatine Fitness Social successful Fresno for the KCNT1 Epilepsy Foundation did each of that.
All for 1 precise peculiar babe who is battling a precise superior diagnosis.
"We've seen thing from 25 to 50% of the kids person a truly bully accidental of passing away. And truthful there's it's scary. There's a batch connected the line, obviously, and we're conscionable trying to bash our champion to springiness our lad hope," said Connor Jensen, Bodie's dad.
Bodie Jensen is conscionable 2 months old. Doctors diagnosed him with a uncommon familial mutation called KCNT1. His parents, Connor and Ali, accidental helium has seizures each day, and astatine 1 point, helium was having 1 each 5 minutes.
Doctors accidental the seizures could interaction his quality to locomotion and speech arsenic helium grows.
The cistron is truthful uncommon that the KCNT1 Epilepsy Foundation says determination are lone 3,000 known cases worldwide.
"It's precise lonely erstwhile you spell done a diagnosis similar this," said Ali.
That is wherefore this fundraiser is adjacent much important for Bodie's mom. She says portion she hopes the wealth raised does assistance the instauration wage for probe to find a cure, the assemblage enactment is conscionable arsenic crucial.
She says she wants each parents going done thing akin to cognize that their dependable matters and determination are radical who privation to help.
"Just arsenic a mom, like, you person a gut instinct. And I deliberation it's important to advocator for your kids, adjacent if you are told that it's okay, get a 2nd opinion, due to the fact that if I hadn't of similar kept asking and it mightiness person been excessively late," Ali said.
Bodie is inactive successful the NICU astatine CRMC, but his parents accidental helium is going to spell to Stanford Hospital soon.
If you would similar to donate to Bodie’s GoFundMe, click here.
