April 22, 1998
Stricken sister triggers crusade
Sharon Neumann of East Bay Township advocates for victims of rare bone disease
By Carol South
Herald contributing writer
When she was 7 years old, Sharon Neumann watched as her younger sister, Nancy, was whisked away to the hospital. More than a month would pass before she would see her sister again. Meanwhile, whispers and tears among family members suggested something was terribly wrong.
Before the trip to the hospital, the day began like any other late summer day in the girls' hometown of Fairfield, Conn. Sharon and Nancy played in the street until evening. They came in for a bath; Nancy washed up first. When their mother went in to help, she let out a blood-curdling scream: Nancy had red, spongy, grapefruit-sized swellings on the back of her neck. The swellings had appeared just that day, without warning or obvious symptoms.
"Doctors first diagnosed her with terminal cancer and expected her to die by Christmas," said Sharon Neumann, now an East Bay Township resident.
Nancy later improved, but months later was diagnosed with fibrodysplasia ossificans progressiva, an extremely rare disease affecting fewer than one in a million people. The disease slowly progresses where bones grow unchecked in soft tissues. The joints in the body gradually lose mobility and eventually lock into position, leaving the victim stiff as a statue.
The stress of coping with Nancy's illness eventually broke up the family, and Neumann took charge as her sister's caretaker and advocate. Over the past three decades, Neumann has watched her sister slowly lose mobility until now even her jaw is completely stiff. Only her hands and fingers remain unaffected, and Nancy uses them to type on her personal computer.
Nevertheless, Nancy married and now lives in Petoskey with her husband, who suffers from the same disease, and their full-time caregivers.
"If I hadn't helped her over the years I don't know what it would be like for her," said Sharon Neumann, who added that they had not met anyone else with the ailment for 20 years. "Some people with this disease starve to death or die from falls or neglect. Their families are financially devastated. Public agencies don't know what to do with people who have such a catastrophic disorder."
Nancy, fortunately, had her sister. And through caring and advocating for Nancy, Sharon Neumann herself has evolved into a crusader.
Ten years ago, she started the nonprofit I Care Network to link people with disabilities, especially those with the bone disease. While not working as a paralegal, she now continues her networking, fund-raising and advocacy work. She is chairwoman of the newly formed Michigan chapter of the National Organization for Rare Disorders, which encompasses 5,000 rare disorders affecting 20 million people. She also helped establish the Bay Area Coalition for Independent Living in northern Michigan, which advocates for greater independence for the disabled.
In May, Neumann is coordinating an international conference on fibrodysplasia ossificans progressiva in Columbus, Ohio. The conference will bring together leading doctors and researchers in the field and offer free rehabilitation clinics for people with the bone disease. More than 50 victims and their families are signed up.
"I've been working on this for 10 years," Neumann said. "I can't tell you how exciting this conference is."
Her most recent fund-raising effort focused on toys. She met Carol Stone of East Bay Township through a mutual friend, and the two have been gathering donations of toys to give to the children at the Ohio conference. On Friday night, they sponsored a toy fund-raiser at The Presbyterian Church in Traverse City.
"As a mom of three healthy boys I feel very fortunate," said Stone, who plans to accompany Neumann to the conference. "If nothing else, we can give a smile to these children."