ELMIRA, N.Y. (WETM) – Jamie Higgins suffers from a genetic cancer disorder that has taken the lives of his daughters, a sister and his father.

The genetic disorder that Jamie has is called Li-Fraumeni syndrome or L-F-S, those with this hereditary disease have an approximately 50% chance of developing cancer by the age of forty and up to 90% by the age of sixty. Children with the disease are also at risk with 40% of kids developing at least one cancer by the age of eighteen, according to data from the Li-Fraumeni syndrome association.

Jamie and his wife Kathy have dedicated their lives to raising awareness on this disease and the importance of genetic testing.

“There’s about fourteen different cancers that fall under the umbrella of L-F-S, so it’s very hard to diagnose…if you have a lot of cancer running in your family, we do ask that you do get genetic testing because cancer doesn’t run in a family without some kind of condition, it might not be L-F-S, but it could be something,” Kathy Higgins said.

Jamie recently published a book entitled “Since you asked: my anecdotal life,” with a portion of the proceeds going to the Li-Fraumeni syndrome association.

“The book is a collection of stories… years ago Kathy gifted me with story worth, which is an online subscription and once a week they send you a random question about your life…then some people said Hey, you should turn that into a book, Kathy had the same idea and turn it into a fundraiser so that’s what we did,” Jamie Higgins said.