GALLIPOLIS — Tori Church, 18, is much like any other young adult woman attending college from Gallia County. She loves her family, her life as a Christian and looks forward to being a teacher in physical education.
What makes her different is her walk beside an abnormal and rare medical condition called ornithine transcarbamylase deficiency.
“What it does is that my liver can’t process protein,” said Church. “So if I have too much protein, it builds up in my bloodstream. I would enter a state of a confusion, possibly a coma and then death.”
“OTCD is usually predominant in males,” said her father Willie Church. “Tori had a younger half-brother named TJ. Like her, he had OTCD, full-blown. He died after a liver transplant.”
TJ passed after complications in conjunction with OTCD.
Willie said that Tori was not originally tested for OTCD until she was eight because medical staff didn’t recommend a test due to her being a girl. Her father said their initial healthcare provider was uncertain of later symptoms being displayed in Tori and she was eventually transferred to Nationwide Children’s Hospital in Columbus.
“They ran some tests and one of her conditions is that she has pancreatic attacks, so she wasn’t allowed to eat until her levels dropped for pancreatitis,” said Willie. “They put her on a a TPN bag (total parenteral nutrition), which is laced with protein. Tori’s sitting there playing a game with her mom and she doesn’t recognize any of the game pieces. She just knew nothing. We went and got the doctors real quick and they came back in. Because of the family history, they tested her ammonia level and it was sky high. That’s one of the first signs.”
According to www.otcdeficiency.com, “Ornithine Transcarbamylase Deficiency (OTC) is a serious and potentially life threatening metabolic disorder, under the general category of ‘Urea Cycle Disorders.’ This is a condition in which the handling of protein and its breakdown leads to a rise in Ammonia which without the appropriate treatment, can lead to significant morbidity and mortality.’”
Willie said that was when they had Tori’s condition tested by a university and were able to properly diagnose her.
Tori would eventually become part of a nationwide study in 2010 based out of Texas Children’s Hospital.
“We’ve been down to Texas a few times and they test and keep tabs on her as she goes through life and monitor her medical records,” said Willie. “As she got older, we now speak on the phone and Tori will be doing that more herself now because she’s 18. We did a full medical records release. If they see anything they want to follow through with, they’ll bring her down to Texas. We’ve been fortunate the last few years.”
Both said that as a Christian family, God had been good to them.
“I have a low protein diet,” said Tori. “I can have around 30 grams a day and I take four different medications three times a day.”
The pair said the biggest challenge was making certain Tori’s protein intake was within reasonable amounts.
“We thought we were born with the perfect child because you’d go to restaurants and see kids shoving burgers and Tori would be getting salads,” said Willie. “We thought she was super healthy and come to find out her body was self-regulating…The worst part as a parent was when she was first diagnosed. She’s done a good job keeping track on her own.”
“I can usually eat what I want,” said Tori. “I just got to watch it.”
Tori said she has cheered her entire life and is looking forward to cheering for the University of Rio Grande and Rio Grande Community College. She graduated from Gallia Academy High School, last year. She coaches youth soccer and is attending college in Rio Grande to get a degree in physical education. She is a freshman.
“I’m doing all these activities in the fall as I’m trying to get adjusted to school,” said Tori.
Tori recently painted a pair of wings on the wall of the Charm Boutique off Court Street in Gallipolis. Tori said she had friends that worked at the location and they suggested Tori paint a mural.
“You see a lot of wing murals across the US as street art,” said Tori. “For me, when I was sick, I saw them a lot. It’s to bring color and life to streets and towns….Having God there has helped a lot. I get down a lot but with God it helps to get me back up on my feet.”
Dean Wright can be reached at 740-446-2342, ext. 2103.