Family loses baby to cancer, starts fundraiser

(WTNH) -- Families dealing with the diagnosis their child has cancer, understandably a tough situation.

News 8 Medical Reporter Jocelyn Maminta has the story of how a Connecticut family is doing what they can to help others.

Imagine hearing that your baby at 11 weeks has cancer, a rare liver cancer, for which doctors tell you there is no cure.

That's what Kurt and Kelly Knotts had to face.

Baby Jamie Knotts' bubbly personality put a smile on everyone's face, even as her health started to change.

"We noticed some struggling with her breathing, some grunting breathing," said Kurt Knotts, Jamie's dad.

Then came the diagnosis.

"The next thing we knew she was having a biopsy for cancer and we have a little baby with cancer, it was just unimaginable," he said.

A little baby with a rare liver cancer.

"It was not anywhere on our radar, so it was just a complete shock," he said.

"She had something called malignant rhabdoid tumor," said Dr. Michael Isakoff, Connecticut Children's Medical Center.

Dr. Isakoff, a pediatric oncologist at Connecticut Children's Medical Center was Jamie's doctor.

"This kind of tumor is very difficult to treat," said Dr. Isakoff.

Jamie lost her fight at five and a half months old, but clinical trials are now improving the odds of surviving a rare cancer.

"Certainly in diseases such as malignant rhabdoid tumor, the future really is in targeted therapy and those are, that's the area where new drugs are introduced with high dose chemotherapy," said Dr. Isakoff.

Inspired by the care they received there.

"We wanted to stay a part of it and help other families who were not as fortunate as us that have to struggle to make ends meet while they care for their children that are sick," said Knotts.

The Knotts family organized Jamie's Run raising thousands of dollars, which helped to build the state of the art Clinical Care Center.

"They came up with these themed rooms for kids."

The family's non-profit foundation has a two pronged approach.

"Funding the family assistance fund and the child life department here they help people make ends meet and then we also fund the clinical trials program to help find a cure," said Knotts.

A family helping other families.

"It's the worst thing that a parent has to go through, we don't want to have other people go through what we went through," Knotts said.

Connecticut Children's Medical Center has more than 100 clinical trials for pediatric cancers. Meantime, storm Sandy is not affecting Jamie's Run. It is set for this Sunday at Standish Park in Old Wethersfield. Registration is at 9:30 a.m.