On Sunday afternoon, Curry Elementary student Shawn Anthony will be ready to display his pitching skills on the mound at Regions Park prior to the Birmingham Barons baseball game.
“I’ve been practicing. I can throw really good,” Anthony said with a sly grin. “I’m confident.”
Looking at Anthony’s physical attributes he seems to be like any other normal kid: happy, rambunctious and “all boy,” as his grandfather, Charles McNair (Papa), would say. However, people on the outside looking in would never guess that Anthony has a genetic disease called cystic fibrosis. According to the Children’s of Alabama website, cystic fibrosis is “a life-threatening disease that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult.”
Approximately 30,000 people in the U.S. have cystic fibrosis. The life expectancy of a child born with cystic fibrosis is around age 40. Some, but not all, symptoms include very salty-tasting skin, poor weight gain, constant coughing/wheezing or shortness of breath, greasy stools, several lung infections and nasal polyps.
“The pulmonary department, endocrine department and the gastrology department, he uses all three departments over there (Children’s of Alabama), because when he was born his intestines ruptured, so he had a third of his intestines removed,” McNair said. “That’s called ‘short gut syndrome.’ He’ll be just fine and then all of a sudden ... He’s already been in the hospital four times this year.”
Anthony was in the hospital for seven days due to a blockage in his intestine. After that he went in for sinus surgeries, four separate surgeries, where huge polyps formed inside his nose and made breathing difficult. A daily routine for Anthony consists of waking up and putting on a percussion vest for 30 minutes to shake up the congestion in his lungs (also done for 30 minutes at night), taking two inhalers (which consists of two different types of medicines used in a nebulizer), taking 12 pills and then enzymes when he eats meals.
Despite his sickness, Anthony continues to live a fulfilled life and enjoys football, basketball, swimming and playing video games. Correction — loves video games.
“He wanted to play football, but they (doctors) weren’t crazy about that because of the stomach surgeries that he’s had. I asked them, ‘What about martial arts or taekwondo,’ and they said that would be good,” McNair said. “Last year he won World Supreme Overall Grand Champion; that’s the highest rank you can achieve for one year.”
For those with normal immune systems, sicknesses like pneumonia or bronchitis wear down on a person’s body for a few days. Anthony has had pneumonia twice and was placed in the hospital for 14 days the first time. McNair said his grandson stayed in the hospital for 121 days after he was born.
With cystic fibrosis, a person’s lungs may become scarred and inflamed and covered in mucus, which could potentially lead to a lung transplant (or double-lung transplant). McNair said learning about the disease, the life expectancy and then dealing with the entire process is rough and tiring at times, but he’s happy for the days he does get to spend with his grandson and other members of his family.
“Nobody knows when they’re going to die,” McNair said. “You never know, but you want to make those odds as good as you can. It’s just something you have to deal with, with any child that’s sick.”
From what family members say, Anthony is a little charmer. During his visits to the hospital, he gives the nurses candy and tons of hugs. Anthony’s doctor, Dr. Wyn Hoover of Children’s of Alabama, has been treating his young patient for almost seven years and has a great comradery with him.
“He is warm, funny, enthusiastic and determined,” Hoover said, “ and a diehard Alabama fan.”
He and McNair joke about this because Hoover is an LSU fan.
“Cystic fibrosis is a fetal diagnosis,” Hoover said. “The average survival rate is 37 years old at this point. His is moderate, but he has to do a lot to stay healthy; he’s rarely in the hospital.”
“We get with physicians in the hospital to nominate patients whose families they’d like to highlight, then they submit names. We have a relationship with the Barons,” said Children’s media relations coordinator Rachel Olis, “and it’s set up to where it’s every Sunday for a child to throw the first pitch. They (the Barons) just came to us when they built the field about a year ago at Regions Park and asked, ‘What can we do to help the patients?’”
McNair and his wife, Jennifer (Gammie), feel blessed to have Anthony and his older sister, Kaitlyn, 13.
“I know I can throw good,” Anthony, who plans on throwing a fastball Sunday, said. “I can run with any kind of shoes but not flip flops or sandals. I don’t like them.”
Anthony said he would like to be a basketball player when he grows up, but he is already considered a superhero to most already.