Breaking the Silence on Brittle Bone Disorder-This Day in Norwood History-June 28, 1991

Newly Formed Support Group Unites Families Battling Rare Genetic Condition and Fights False Child Abuse Allegations

A profound sense of long-awaited emotional breakthrough and mutual understanding filled the room at the Norwood Public Library last night as a newly formed support group convened. For the families gathered, it was a historic opportunity to shatter the isolation that frequently accompanies osteogenesis imperfecta—a rare genetic condition widely known as O.I. or brittle bone disorder. The disease, which currently affects approximately 40,000 individuals nationwide, leaves human bones as fragile as fine china. Because the medical community still does not know what causes the disorder, there is currently no known cure or standardized treatment, leaving patients and their parents to navigate a complex medical labyrinth entirely on their own.

For 72-year-old Mary Louise Burckhart of neighboring Westwood, the gathering provided a life-altering moment of deep personal validation. Looking around the library room, she finally felt truly connected to a broader community. It marked the very first time in her long life that she had ever physically met another person afflicted with the exact same disease that has progressively weakened her skeletal frame since birth.

“I was never really diagnosed with O.I. because the doctors didn’t know it existed when I was young,” explained Burckhart, who utilizes a wheelchair for daily mobility because her leg bones did not properly form during childhood. Reaching out to the younger parents in attendance, she enthusiastically praised the initiative: “This group is wonderful for young people just starting out. I joined because there’s strength in unity, and it means a lot for the people who have this to meet each other.”

The foundational support group is the direct brainchild of Eleanor Jordan and her husband, Michael Jordan, of Norwood, whose family’s agonizing struggle with the obscurities of the medical system won intense national media attention last year. The Jordans’ daughter, 5-year-old Narelle Jordan, was born in Norwood with the severe disorder and had already suffered a heartbreaking total of 12 broken bones by the time she reached her third birthday.

Because the rare condition was so deeply misunderstood by mainstream healthcare workers at the time, physicians at Children’s Hospital in Boston—where Mrs. Jordan initially rushed Narelle after her very first fracture four years ago—failed to make the correct genetic diagnosis. Instead, hospital staff shockingly accused Eleanor Jordan of actively beating her own child.

The catastrophic diagnostic error unleashed a grueling, year-long nightmare for the local family, setting off intensive, hostile investigations by state social workers and local police, complex court proceedings, and traumatizing custody battles. Though Narelle is back home and doing well today, the family is still picking up the pieces.

“The worst part was wondering what was wrong with Narelle and why was this happening,” a reflective Michael Jordan shared last night. “The system, the whole nine yards is not right. We don’t want this to continue.” Having survived the bureaucratic crucible, the Jordans have made it their life’s mission to leverage their local group to aggressively increase public awareness of O.I. and provide immediate protection to other innocent parents who are wrongly accused of child abuse by misinformed social agencies.

The critical importance of shared information drew participants from great distances. David Nelson and Patty Nelson made the long drive up to Norwood from their home in Falmouth on Cape Cod, desperate for the rare opportunity to trade clinical insights and coping mechanisms with fellow parents. Their 5-year-old son, Shawn Nelson, has courageously battled the disorder since birth, enduring an astonishing 20 independent bone fractures in his short life.

While Shawn sometimes relies on a wheelchair to conserve his strength, he is remarkably able to walk today because surgeons successfully implanted internal telescoping metal rods directly down the centers of his long leg bones to provide structural reinforcement. “It’s good to see other people who have a common problem,” Patty Nelson stated softly, watching her son interact with the other children.

Serving as the professional anchor and medical adviser to the new support network is Dr. Peter Mebel, a highly respected orthopedic surgeon at Norwood Hospital. Dr. Mebel holds a unique distinction in the case, as he was the very first physician to suspect that young Narelle Jordan was actually suffering from O.I. rather than physical trauma, effectively saving the family from permanent separation.

Addressing the library meeting, Dr. Mebel emphasized that widespread education is the only way to prevent future legal tragedies. “It’s important to get the disease well known so the similarities with abuse are known,” the surgeon stated to the group. “You can do a great deal of good right here if you do that.”

Dr. Mebel explained that the medical community has only recently developed the sophisticated clinical parameters necessary to consistently diagnose brittle bone disorder, noting that much about its underlying mechanics remains poorly understood. He clarified that the disease exhibits vast differences in clinical intensity, leaving some victims only mildly affected while others require intensive orthopedic intervention. He noted that while fractures are painfully common during infancy and toddlerhood, the frequency of breaks thankfully tends to decrease as the patient ages and bone density naturally shifts. To facilitate expanded regional outreach, the Jordans announced they have established a dedicated mailing address, urging anyone seeking literature or family guidance to write to them directly at P.O. Box 833, Norwood, MA 02062.

Archival Note: This article has been dynamically reconstructed from the original public record print archives of the Patriot Ledger