Family First: Neuroblastoma

Posted: Friday, February 19, 2010 --- 4:13 a.m.

When a family hears the word "cancer" it's heart-breaking.

But we often think it can never happen to us - or worse yet, our children.

This morning, we introduce you to a local couple from Belleville who wants to put neuroblastoma on the map - and get you to join their "Team Charlotte."

" You're basically going in for a regular check up and suddenly you're going home with cancer and chemotherapy.. "

When Charlotte was four months old, she was diagnosed with neuroblastoma.

It's a form of cancer that starts in certain types of nerve cells in the embryo or fetus.

It is often diagnosed as a solid tumor, Charlotte's was found in her leg.

" Everything happened so fast and you're just in shock and it's hard to absorb a lot of it. "

Now that one-year-old Charlotte is done with treatment, Kristi and Kevin Rufener are hoping their daughter's story can make a difference.

"Her oncologist and her occupational therapist could never tell us .. we would get use of her legs back. She's out and about more often, meeting people, we're working to get the word out."

They've gone out of their way to meet people whose children are fighting the same cancer.

They even started a website to get more funding and research for neuroblastoma in particular.

"The chemo drugs they give adults are the same ones they give kids and the studies that we're part of are basically trials to see how much of this drug we can give a child. Because they're in adult doses so that was kind of a scary thing to find out as well. "

Every year, 600 cases of neuroblastoma are diagnosed. And Kristi and Kevin aren't the only ones working to spread the word.

Students in Belleville made a quilt to draw attention to the disease and help families like theirs make ends meet.

"We're getting sacked with pretty decent sized bills.. it's really nice to see people going out and purchasing little bracelets and stuff like that. Little itty bitty things that help pay those bill down so we're not just dumped with tons and tons of bills as well."

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