Rare disease, rare opportunity

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Rare disease, rare opportunity
By Kevin Leininger

“That which does not kill us makes us stronger.” - Friedrich Nietzsche

Nietzsche's been dead since 1900, so he never got the chance to meet Lisa Heral. But the German philosopher's famous quote certainly describes how this Fort Wayne woman has turned a potential family crisis into a cause that could benefit not only her son but others as well.

When Justin Heral noticed swelling and numbness in his face three years ago, he thought it was a sports injury. But when the symptoms persisted, doctors and X-rays followed - along with fears that Justin, now a 17-year-old North Side High School student, might have cancer.

The good news is that he didn't have cancer. The bad news is that he had fibrous dysplasia (FD), a nonlethal but often painful childhood bone disease so rare that the comprehensive case studies needed to develop consistent and successful treatments didn't even exist.

Lisa Heral vows to change that - and soon.

Her son's diagnosis induced the emotions any loving mother would share, plus something more unusual: the determination to learn more about this relatively unknown disease and to improve the medical community's response to it by collecting and sharing that knowledge with others.

Inspired by her son's plight and informed by her own nursing background, Heral decided to earn a bachelor's degree in general studies from Indiana University- Purdue University Fort Wayne, where she learned how to create an online registry that will track FD cases worldwide, along with the type and effectiveness of treatments used.

That decision paid off even before Heral earned her diploma last month. With IPFW's help, she attended a National Institute of Health conference on rare bone diseases in Washington, D.C., and landed an internship at Zimmer Inc., one of several Warsaw-based makers of orthopedic devices. Eventually she met Erin Springer-Deeter, co-founder of OrthoPediatrics, a Warsaw company that specializes in bone-replacement devices for children - the kind of devices many FD patients need.

It was through that association that Springer-Deeter was inspired to create Wish Bone Inc. - a foundation named by Justin Heral that will provide financial support to individuals and groups struggling against childhood orthopedic diseases. One of the first grants, Springer-Deeter said, may be to promote Heral's dream to compile a registry of FD cases.

They'll be able to work closely together on the project: Heral recently went to work for OrthoPediatrics as a customer services representative.

In one sense, the Herals' story seems too easy, almost as if it were written in Hollywood: handsome, athletic son gets rare bone disease, medically trained mom goes back to school, meets famous bone doctors, interns at bone-replacement company, gets job at another bone-replacement company, persuades executive to start foundation specializing in bone-related problems.

And they all lived happily ever after.

But real life never follows so simple a script. Some families might have been paralyzed by the news the Herals received three years ago. They were energized instead - energy they will need because, even though Justin's case is relatively mild, there is no cure for FD. He will have the disease the rest of his life, and knows it could get worse.

Justin also knows that, because of what his mother has done for him and others, the future is brighter than it seemed just a few years ago.

“It scared me the day I heard (I had FD), but then I decided not to worry about it,” said Justin, adding that his life hasn't changed much because of the disease. He's thought about studying architecture, but the fight against FD has him considering a career in orthopedic engineering.

It's an illness that should be more manageable in the future, because his mother's registry will allow doctors to track which treatments work, and which - such as fighting FD with radiation - can make it worse.

To Justin, his mother's work is a source of pride. “She's one of the experts; she knows more about this than most doctors,” he said.

But to Lisa Heral, husband Larry and 23-year-old son Tanner, Justin is the true hero. “He's handled this diagnosis with such strength and integrity that it is an inspiration to all those who know him.”

Starting with Mom.

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