“Linda Fry, 67, Rushville, died Friday, March 21, 2008 as the result of a life-long struggle with a hereditary bone disease, Osteopetrosis. ... Mrs. Fry was a 1960 graduate of Milroy High School and was a farm wife and homemaker while raising her daughters. After raising them, Linda obtained a real estate license and later joined Bank One in Indianapolis where she worked until she retired for health reasons in 1997. ... Mrs. Fry’s lifelong hope was that others who are afflicted with Osteopetrosis (including her sister, one daughter and two grandsons) will not have to suffer as she did. Therefore, in lieu of flowers, she and the family request that donations be made to the International Osteopetrosis Association. ...”

It reads just like most obituaries that you would find in any other newspaper. But it’s what’s between those lines that really mattered in the life of Linda Fry, and to the survivors she left behind.

She was aware that she had Osteopetrosis as a young girl. Also known as Marble Bone Disease, it is an extremely rare, inherited disorder caused by mutations on the CLCN7 gene, whereby the bones harden, becoming more dense.

In sufferers of this disease, old bone tissue is not destroyed and removed from the body. This results in bones that are denser and more brittle than normal bones.

Mild forms of Osteopetrosis may cause no symptoms and present no problems; however, more severe forms can result in stunted growth, deformity, increased likelihood of fractures, bone infection, enlarged spleen, kidney problems, anemia and other blood issues. Osteopetrosis can also lead to blindness, facial paralysis, and deafness due to increased pressure put on the nerves by the extra bone.

During Linda’s youth, she had multiple breaks, and the disease was finally diagnosed through x-rays. The bones of someone with Osteopetrosis look significantly different than someone with normal bones, and for many years this was the only way to diagnose the malady.

None of the early breaks had a significant impact on her life, although a broken back during her senior year in high school delayed her graduation by one year.

Linda was married April 29, 1961 to David Fry. Together they worked the family farm and had five daughters in eight years. Kathleen and Kristine (twins), Elizabeth, Marcia and Julie were the light of her life.

“My grandmother used to tell my mother ‘save your steps now so you’ll have them later,” daughter Kristi Kuhn said. “Well, she didn’t listen. She drove herself and drove herself. She was very hardworking, and add that to the fact that we grew up on a farm. She was the one who had everyone over for holidays. She was always in her garden. And with a huge family, she was constantly on the go. She didn’t save her steps.”

At age 29, Linda suffered a hip fracture, and from that point forward Osteopetrosis had a very debilitating impact on her life. The once-striking woman, who would make men stop in their tracks and do a double take, slowly began a metamorphosis as the disease took its toll on her body.

Although they had good intentions, everything the doctors did to Linda only made her condition worse.

“There was so much harm done to my mother doing experimental things, just because this is a very rare disease,” Kuhn said. “And because it’s so rare, most doctors don’t know enough about it to treat it properly. I’m not saying she wouldn’t be in a bad way anyway, but all the treatments and pins and surgeries that they tried basically did so much more damage than what she already had.”

According to Kuhn, in bones there is a balance of osteoclasts and osteoblasts. The osteoblasts and osteoclasts are responsible for removing bone and building bone, so you’re constantly rebuilding your whole life. Osteoporosis sufferers aren’t getting new bone, and their current bone is very thin and brittle. With Osteopetrosis, it’s the exact opposite. Osteoclasts (the mechanisms that remove old bone) in sufferers don’t work, so you have new bone growing on top of that old brittle bone, so they become very dense, almost chalk-like.

“You’d think ‘Oh! Then you’ll have extra strong bones!’” Kuhn said. “But no, when you’re building new bone on top of old useless bone you just get a mass of useless, weak bone.”

X-rays taken of Osteopetrosis sufferers will show bones that are completely opaque. With a normal person, they’re translucent, and you can see through the bone.