Two years ago, many readers of the Wetzel Chronicle had the honor of reading about a very special girl-Cadence J. Pierce. The story was about Cady's wish to see Miley Cyrus being granted by the Make A Wish Foundation, as well as a background on Cady's struggle with a disease-propionic acidemia. The story of Cady and her family takes far more than that article and what's written here to contain the trials and triumphs of Cady. She and her family have experienced a roller-coaster of ups and downs, but always with the hope and the fight that prevail through it all.
Their story is now getting more exposure thanks to Cady becoming the 2012 Children's Miracle Network's Champion for West Virginia.
Cady's disease is a complex one that at first perplexed every doctor that surrounded her. Her first couple weeks of life were very much touch and go, so shaky that Leslie Pierce, Cady's mother, describes Cady's first lab results as being "incompatible with life." After being transferred from Wetzel County Hospital to Morgantown, where she wasn't expected to survive the ambulance ride over, Cady's condition stabilized for a short while and then took another downward slide. Among many likewise serious issues, her liver was so enlarged that it was protruding out from below her ribcage; she was in a hepatic coma, and she suffered three grand mal seizures.
Children’s Miracle Network Champion Cady Pierce sets a good example by donating to CMN at Wal-Mart store #4278 in Quincy, W.Va.
With no answers and no one else to turn to, Dr. Marybeth Hummel, WVU's Chief of Genetics, was called on a whim. In moments, she had an idea of what was going on and ordered the doctors to pull the nasogastric tube. What was supposedly nourishing Cady, and thus sustaining her life, was actually killing her.
Even though it still took several weeks before an exact diagnosis was made, Dr. Hummel was able to narrow Cady's condition down from 300 to three genetic diseases. This allowed her to begin a more specific type of treatment to assist Cady. Despite Cady receiving treatment and showing a slight improvement, doctors cautioned the family against getting their hopes up. It was said that Cady would likely never hear, see, walk, or talk; she would likely remain in a vegetative state for the rest of her, what was predicted by doctors to be, short life.
Cady did survive and at three months old she was officially diagnosed with propionic acidemia. This is a rare, inborn error of protein metabolism. A faulty gene in the liver does not allow certain amino acids to be broken down. Consequently, the ensuing build up of toxins causes ammonia levels to rise, shuts down the liver, causes nausea and vomiting, organ failure, and leads to brain damage, coma, and death. Every one out of 150,000 children are born with PA; 75 percent of these die in the first weeks of life. Cady is the only child in West Virginia who survived the diagnosis. "There is no medical explanation why Cadence avoided death, let alone everything else in that initial prognosis. There is only a miraculous one," Leslie has stated.
A year after her Make a Wish story was first told for the paper, Cady experienced two life-threatening cascades that caused a coma. The first time she ended up losing 65 percent of her hearing. Four months later, another cascade began, but Cady's family and doctors were a bit more prepared. And although she laid in a coma for several days, she did not suffer any detrimental or damaging effects. Even after the first, more damaging coma, Cady was back to playing soccer the very next month.
Two years after being granted her wish, it is obvious Cady is still fighting and doing remarkable things, most notably now serving as a CMN Champion. It is her mother's hope that with that status, the word will be spread about propionic acidemia, as well as the wonderful things that Children's Miracle Network does for not only its hospital patients, but also the families. As West Virginia's CMN Champion, Cady will be able to go to Washington, D.C., in September, as well as Disney World in Orlando, Fla. She has already attended the 2012 Winter Gala at WVU Children's Hospital and the Mountaineers' Gold-Blue Spring Game in Morgantown last month.
Leslie is currently involved with making plans for several possible fund raisers for the Children's Miracle Network throughout the area, including a Zumbathon on Aug. 25 and a catfish tournament on June 9. A car show and a 5K race are also in the works. The local Wal-Mart, connected with Children's Miracle Network, is currently seeking donations for the organization. All money raised in the state for Children's Miracle Network stays in the state. Leslie affirms that donations, and in effect the care that CMN gives, "mean the whole world to a mother pleading at the side of an Isolette bed."
Leslie credits WVU Children's Hospital, a Children's Miracle Network hospital, with the extraordinary care they have given her daughter. In her speech for the 2012 WVU Children's Hospital Winter Gala, she said "I have always been awed by the grit that Cady's medical team demonstrates in her care. . . The intelligence and determination that surround her rival any great think-tank in the world. I never take for granted that though we are a humble state, we do not have to settle for meager healthcare for our children. . . That too, is a miracle."