An area family needs your help to buy a new vehicle. But, it’s no ordinary van for a child that is anything but ordinary.
If you think it’s tough to get up and go with your family, just imagine what it’s like for the Venegoni’s. Five-year-old Chandler has a life-threatening genetic condition called KCNQ2, which, among other things, triggers epileptic seizures.
What the family really needs is a specialized van, that way they can literally roll Chandler into and out of it to get from one place to another. One of chandler’s personal nurses says it’s not just a case of picking up him, his 75 pound chair and going. He’s tethered to three different pieces of medical equipment that keep him alive–one of which is a feeding bag.
“It can not be pulled or removed,” nurse Jessica Kennedy explained. “That’s an immediate trip to the hospital in Kansas City. Along with that, he has oxygen and suction with are both majorly needed for episodes or seizures.”
“Even with our nurse, it takes both of us still to load Chandler,” explained Alicia Venegoni, Chandler’s mom. “It takes both of us to lift Chandler, but it takes both of us to lift his chair, get all of his equipment in the van, and so having an accessible van–everything will be stay directly on his chair.”
“We’ll be able to just load him right up into the van without taking him out of the chair, which will make loading and unloading so much faster,” added Caleb Venegoni, Chandler’s dad.
Family friend Hanna Stevenson has come up with a zero impact form of exercise to help raise money for the cause. She calls it, “The best 5k you’ll never run.”
“Go to VanForChan.com, and there is some great information about the family, great videos to watch as well as some more information on KCNQ2,” Stevenson explained. “At the bottom of the page is where you register for the race.”