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PROVO — October isn't just a month for Halloween. It's also a month dedicated to raising awareness for a rare, and serious disorder called Primary Ciliary Dyskinesia, or PCD.
This weekend, a Provo community came together to raise money and show support.
There were princesses, carriage rides, and of course, more pumpkins then you can count, as it was less than a week before Halloween. But it was an especially important night for 14-month-old Sam Bednar, who has the disease.
PCD is a condition that affects the little hair-like structure in his ears, sinuses and lungs that are needed to keep out infection.
Bednar is battling another serious health issue — one his parents first learned of at at a 20-week ultrasound.
"We thought we were going to find out if he was a boy or a girl,” said Sam’s father, Jeffery Bednar. “We found out that his organs were reversed.”
We want more people to know about this condition and also know that there is hope.
–Anne Bednar
About 50 percent of kids with PCD have organs that are a mirrored image of the normal configuration.
If the last name of this family sounds familiar, that's because Sam is the grandson of Elder David A. Bednar — a member of the Quorum of the Twelve Apostles for The Church of Jesus Christ of Latter-day Saints.
"We want more people to know about this condition and also know that there is hope,” said Anne Bednar, Sam’s mother. “They can live normal lives and fulfill their dreams.”
The Bednars have been fundraising money for the PCD foundation to go toward early detection and treatment for other families just like theirs.
"We moved here just over a year ago. It's been amazing to watch our neighbors that we're just getting to know come by and support our cause, Sam's cause,” said Jeffery Bednar.
Local artists also donated paintings to help the cause.
Although the night was mostly about fun for all the kids here, there was one little boy — who if he could talk — would probably say, "thank you."
