(Circleville, KS)--One Northeast Kansas family is fighting to keep up with medical bills they cannot possibly pay, while their daughter fights an un-winnable battle with a rare disease.
The Funds, of Circleville, KS (near Holton) are doing everything they can to make life comfortable for daughter Amber, who suffers from Velovardiofacial Syndrome.
It affects her immune system, as well as other functions. A botched surgery complicated matters for the 14-year-old.
Her family is now stuck with medical bills that are going through the roof. One co-pay alone was $54,000. They also need to buy a new wheelchair, which will cost around $12,000.
"If nobody knows, there's no research, if there's no research, these kids keep deteriorating." said Brenda, Amber's mother.
She wishes there was a celebrity of some kind behind the disease to bring attention to it.
Click the video to see the journey the family has taken, as well as their thoughts on religion, bills and their future.
If you would like to help the family, they do have a fund set up at Farmer's State Bank in Holton under Amber's name.
But you can also help out by visiting Brenda's web site, where she sells hand-made quilts, all to benefit her daughter. Just click the link.