Breathe Easy


An up-close look at cystic fibrosis.

by Cherri Ellis

 

Jeri was always a little bit of a hypochondriac. That is why she didn’t tell even her husband when she took their 2-year-old son, Jerod, to the pediatrician to be tested for cystic fibrosis. She knew he would say, “Honey, just because your best friend’s nephew was diagnosed with cystic fibrosis does not mean one that one of our kids now has it. CF is genetic. We have no family history.”  

But Jeri was bothered by the fact that Jerod was at the doctor much more than his 4-year-old sister, Jenna. And although Jerod weighed 25 pounds by six months of age, at age 2, he still weighed the same.

Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog organs, mostly the pancreas and lungs. The test for CF is a simple. There are no needles or pain. A small electrode is fastened to a place on the upper arm, which causes it to produce sweat that is tested for too much sodium chloride. It doesn’t hurt or take long, and it is almost 100 percent accurate. Jerod tested positive. Three years later, after much soul-searching and genetic counseling, twins were added to the family. One tested positive and one did not.

In order to be born with CF, both of your parents must carry the defective gene.  Every time two carriers have a baby, there is a 25 percent chance the baby will have CF, a 25 percent chance it won’t, and a 50 percent chance that it won’t but will be a carrier.  Jeri and Joe’s kids represent all four statistics. Jenna does not have CF, Jerod and Jillian do, and Jonothan doesn’t, but is a carrier.

Although the family’s days have been shaped by the disease, they will not allow it to define their lives. They are not four kids, two who have CF and two who don’t. They are four kids, all of whom are amazing.

Jenna is 20 and is a prima ballerina. She trained with the School of American Ballet from the time she was 14, living in the Julliard dorms in NYC. Jerod didn’t get the memo that CF kids are slight, and at 18 years old, he is 6’2” and weighs 187 pounds. He was a pitcher in high school and wants badly to play baseball in college. Jillian, 13, is a dancer and competitive cheerleader flyer. Her twin, Jonothan, is a performer in his own right, singing and lighting up the boards in the theater. Line them up, snap a photograph, and you will be hard pressed to guess which two have cystic fibrosis.

Unless, of course, you’re around to see the enzyme pills that Jerod and Jillian take whenever they eat a meal or a snack. Five for him, three for her. Their pancreases don’t function, so the pills help them absorb about 40 percent of the nutrients from their food.  When they were little, Jeri would have to perform hour-long pounding massages on their backs every morning and night to clear their airways.  Research has made progress, and they now have vibrating compression vests that they wear twice a day, multitasking as they take breathing treatments with their nebulizers. Any infection is dangerous, and they are closely monitored, routinely charming the nurses at Children’s of Alabama.

Their mom is a warrior. She is a dance professor at Auburn University, and when you see an athlete perform a particularly deft move on the court or field, chances are she had a hand in it. She became an outspoken advocate immediately, raising research money and speaking to groups across the country. Even with insurance coverage and both parents working, the family averages $1,000 a month on copays alone.

This is where you come in. Although Jerod’s academics have gotten him accepted to several schools, the guy just wants to play ball. He could get his chance at Division 3 Maryville, but the offer doesn’t include financial support. With the help of Joanna Chizik, there has been a scholarship established that will be not just for him, but subsequent CF patients as well. You may recognize Jerod. Remember the infamous photograph of Auburn Coach Gene Chizik glowering in the background of his daughter’s senior prom picture? The boy with the big smile in the front yard whose arm is encircling her waist?  That’s Jerod.

chiz-promMoney is tight, but so are the kids. When Jenna turned 18, she told her mom she wanted to get a tattoo. Initially taken aback, when Jeri saw that the plan was to honor her siblings with a cursive “Breathe Easy” on her ribcage, she was so touched that she got one, too. When Jerod turned 18, he got the tattoo as well, right on his back where his mom used to pound. In his own tribute, his “Breathe Easy” is in the handwriting of his little sister.

In the 1950s, children with CF were not expected to live long enough to go to elementary school. Now, the average life expectancy is in the 40s. As Edwin Louis Cole said, “Expectancy is the atmosphere for miracles.

If you are able, throw a little love at Jerod’s scholarship fund. Visit jeridickey.wix.com/jd-spirit-of-cf-1. That way, when younger cystic fibrosis patients see Jerod on the mound, they will know that they, too, can reach for their dreams.

One Response to “Breathe Easy”

  1. Jeri Dickey says:

    Thanks for sharing our story. Jerod just wants to keep on knockin’ CF outta the ballpark and to inspire others with CF to do the same!

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