Faces of the Valley: Lower Burrell woman advocates to inform public on brittle bone disease

Sandwiched between the road paving report and a Memorial Day parade update, Nikki Watson took out her cellphone to record Lower Burrell Mayor John Andrejcik reading a proclamation for Osteogenesis Imperfecta (OI) Week during a recent council meeting.

Also known as brittle bone disease, OI is a rare gene mutation causing a deficiency in collagen, loss of bone strength and mobility issues. The bone disorder affects one in every 20,000 people, according to the Cleveland Clinic.

Watson, 37, of Lower Burrell, has a child, Niko, 4, afflicted with OI. She continues to serve as an activist to help educate parents, health workers and Lower Burrell Council on working through OI.

She hosts a popular blog, nikkiwatson.love, and speaks publicly about OI, including delivering the keynote address at the University of Pittsburgh’s Health and Rehabilitation Sciences Fall Recognition Day Ceremony in 2019.

Watson’s journey started when she learned something was wrong after a 20-week ultrasound and then a prenatal diagnosis when she was pregnant with Niko.

“I was led to believe that the prenatal diagnosis was the end,” she said, “but it was just the beginning.”

The first thing Watson tells parents and others who contact her because of an OI diagnosis is: “Congratulations. Your journey is so more than that snapshot at 20 weeks. It’s about early intervention, treatment, community and helping your child thrive.”

Watson and her family are entrenched in the Lower Burrell and New Kensington communities.

Watson and her husband, Sean Watson, a Lower Burrell native, have four children. They own several businesses, including restaurants and the architectural materials firm Sustain-ABLE Matter(s) in New Kensington.

Watson currently is serving her first term as an elected member of the Burrell School Board and a board member of the Westmoreland Intermediate Unit.

For her OI advocacy work, Watson wants to emphasize that OI is not the end. She sees her role as educating the public, parents and medical professionals on the rare disorder. She advocates avoiding “victimhood” and encourages parents and general medical practitioners to learn more about OI and find the best medical resources.

“Nikki is a ‘force of nature’ when it comes to advocacy,” said Ronna Rae Hochbein, director of rehab at the Therapy House in Tarentum.

“We have used Nikki’s extensive YouTube channel to show our therapists how to implement occupational therapy at home,” Hochbein said. “Her videos on OI, advocacy and carry-through are amazing.”