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Benefit set for rare disease

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By Alex Wimsatt

 MOUNT WASHINGTON - Toni McKinley remembers thinking she had a perfectly healthy baby after giving birth to her son Trent.

On the outside he appeared perfectly normal, exhibiting minor health problems common among infants, but inside baby Trent’s organs were inundated with toxins his body couldn’t process. 

Five weeks after Trent was born Toni and her husband Dave noticed something wasn’t right, so they took Trent to the hospital. 

Trent was diagnosed with propionic acidemia, a rare genetic disorder that hinders the body’s ability to break down protein, which causes harmful substances to build up in the blood and urine. 

Now nine years old, Trent has had to walk a metabolic tightrope of getting enough protein for normal growth and development and getting too much protein, which can be deadly. 

He has to be very careful about who and what he comes in contact with. Even the slightest virus can cause life threatening implications. 

Because of his illness, Trent has developed slower than his peers. He follows a strict diet consisting of only a few grams of specialized baby formula a day and he can’t attend school. 

“He’s basically had to live his life in a bubble,” Toni McKinley said.

While Toni said she wouldn’t wish PA on her worst enemy, she said she and her husband have learned to never take anything for granted, especially Trent’s gradual progress and the work of the Propionic Acidemia Foundation. 

The foundation, which assists PA families across the country, lending financial and emotional support while working to find a cure, has been a constant in the McKinley’s lives since Trent’s diagnosis. 

The McKinleys have worked to raise money and awareness for the cause in recent years, but as Toni explained, it’s difficult to rally support for a disease that very few people have heard of. 

When Trent was born doctors didn’t screen for PA in infants. Toni advocated expanding infant screenings to include PA. Today, most hospitals screen for the disorder at birth. 

Toni said she’s done her job advocating expanded newborn screenings; now it’s time to find a cure and raise awareness.

The problem is that PA receives little attention because it’s so rare. 

Trent is one of only three cases in Kentucky that the McKinleys know of and only one in every 100,000 babies is born with PA in the U.S., according to newbornscreening.info. 

Hoping to get the word out and raise money for the PA Foundation, the McKinleys enlisted the help of Mount Washington’s Salt River Masonic Lodge. 

On Sunday, the McKinleys will join masons and others for a special event aimed at raising money for the PA Foundation.

Salt River Lodge member Charlie Long, who is helping coordinate the event, said he and his fellow masons hope to raise as much money as possible for the foundation, but more than anything they hope to bring attention to the disorder and inspire people to join the fight for a cure.

Mount Washington Fire Station 1 at 772 N. Bardstown Road will host the event, which begins at 2 p.m. 

The event will feature live entertainment, karaoke and a fish fry. At 4:30 p.m. there will be a live auction. 

Auction items include cakes, gift certificates, artwork by local artist Sharon Millner, a country ham, tools, collectibles, quilts, vouchers for horseback riding lessons and Heritage Hill golf club worth $350, an autographed University of Louisville ball and limited edition Christmas ornaments by renowned Civil War artist Mort Kunstler

“It’s unbelievable all the stuff we’ve got,” Long said, adding that every item up for auction has been donated. 

All proceeds from the event will go to the PA Foundation. Cash donations will be accepted. 

Toni asked that everyone who is able please attend the Salt River Lodge event and contribute to the cause that has been so dear to her family. 

“I don’t know where we’d be without the PA Foundation,” Toni said.

For more information about the event, call Long at (502) 538-7660. Those who can’t attend the event, but would like to contribute can mail checks made out to the Propionic Acidemia Foundation to Long at 434 Riverview Drive, Mount Washington. 

To learn more about the PA Foundation and Trent’s story, visit www.pafoundation.com.