Community Corner

Loving Mom and PCD Foundation Launch National Awareness Campaign

Lori Ondos has been on a journey since her son Braedon was born. He suffers from primary ciliary dyskinesia, a life-threatening disorder unknown to many.

He plays piano, he's brilliant at building robots and he possesses remarkable intelligence. One would never suspect a feeling of defeat or his struggle to survive.

Braedon Ondos, 10, was born with primary ciliary dyskinesia, a disorder with symptoms similar to cystic fibrosis, but more serious than many medical professionals had said or seen. 

A chest X-ray revealed Braedon's heart was on the right side of his chest, as well as situs inversus totalis, a congenital condition in which the thoracic and abdominal organs are in a complete mirror-image position in the chest and abdomen.

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Peters residents Lori and Jim Ondos' lives changed hours after their third "healthy" little boy was born. Within the first seven months of Braedon's life he had pneumonia five times. The family researched, biopsies returned inconclusive and questions were left unanswered. 

At the age of five, Braedon weighed only 35 pounds and was encountering pneumonia 13 to 14 times a year. Soon after, a biopsy confirmed his diagnosis as PCD.

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PCD is a progressive disorder affecting organ systems that rely on ciliary activity for proper function, including the upper and lower respiratory tract, the middle ear and reproductive organs. 

Rare disorders are at an extreme disadvantage in the field of medical research, said Ondos. The market is too small to justify the research expenses. Thus, her reason for launching the national campaign "Unmasking the Faces of PCD."

"Only 333 people have been diagnosed with PCD," she said. "There are an estimated 20,000 who haven't been diagnosed because of its misconception; it mimics so many diseases."

As national fundraising chair for the PCD Foundation, Ondos, and a myriad of others, are on a mission to find a cure. 

"One of the main reasons I am deeply involved in the PCD Foundation today is because I believe that proper education, support, guidance and awareness are why foundations are so important for rare diseases," she said. 

"I don't want other families to have to go through what we did to get the diagnosis. The lack of knowledge in the medical community about this disorder is frightening and sometimes actually deadly." 

She says she still faces many obstacles with Braedon, and relies on her deep faith and motherly instinct in every decision she's made—including one in particular that was life-changing. 

Braedon started seeing a chiropractor who taught the Ondos family how Braedon's immune system was compromised from so many medications.

"He helped us slowly wean Braedon off daily antibiotics and medications and use adjustments to stimulate Braedon's immune system," Ondos said. "It took about seven months before we started to see some really positive results and nearly three years later Braedon has gained 40 pounds and rarely gets pneumonia." 

Braedon is treated in a cystic fibrosis clinic in Pittsburgh, which requires daily aggressive therapy to keep his lungs as free of infection as possible.

As an advocate for her son and PCD, Ondos hopes to help many other mothers who are facing, or will someday face, the same difficult situation. 

"I am confident that one day we will find a cure for PCD and will fully understand this disorder," she said. "Until then, we will work tirelessly to raise awareness of PCD and related disorders." 

Save the date for Sunday, June 26 for the , which starts at Ann's Restaurant in Bethel Park, followed by a picnic at Mineral Beach. Pre-register by June 16 and receive a free T-shirt. All proceeds benefit primary ciliary dyskinesia. Event details can be found .

For more information on PCD or to support the foundation, please contact Lori Ondos at londos@pcdfoundation.org. Visit the PCD Foundation's website here.


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