WHERE ARE THEY NOW?

Michael Burke / THEN: 1-year-old cystic fibrosis patient with progressive lung disease now 51-year-old Ironman athlete

THEN NOW

When Michael Burke was a 1-year-old patient at SSM Health Cardinal Glennon Children’s Hospital, his parents were told he would be fortunate to live until he was 7 due to progressive lung disease caused by cystic fibrosis. Now 51, Burke plans to bicycle 5,000 miles this year, a thousand more than last year.

“Cardinal Glennon set me up for every wonderful thing that I have been able to do and live decades beyond my life expectancy,” he said. “I’ve been able to run nine marathons, 20 half-marathons, a 70.3 Ironman, travel the country and be married. The hospital made that possible.”

Burke was an SSM Health Cardinal Glennon patient from 1971 until he transitioned to the adult cystic fibrosis (CF) program at Saint Louis University Hospital at the age of 22. His physician was the late Tony Rejent, MD, a pioneer in CF care, founder of the Cystic Fibrosis Center at SSM Health Cardinal Glennon and its director for 40 years.

Also legendary among generations of patients was Mary Ellen Judge, the pediatric nurse practitioner who retired in 2008 after 48 years at the hospital and 32 in the CF Center. She and Burke have stayed in touch.

Following Burke’s life has been “thrilling,” she said. “I saw quantum leaps and there have been more than quantum leaps since I left.”

“You would think a hospital would be a place you would want to get away from, but it wasn’t like that,” Burke said. “I played in the hallways. The nurses were amazing. It was pleasant.”

CF is a genetic disease that causes mucus in some body organs to thicken, causing persistent lung infections and liver disease. Mucus impairs the pancreas’ release of enzymes that help the body absorb nutrients, resulting in malnutrition. About 1,700 genetic defects have been linked to CF.

About 30,000 Americans are living with the disease and 1,000 more are diagnosed annually, according to the CF Foundation. When the CF Foundation was formed in 1955, there were no treatments for CF and its patients rarely lived long enough to start school. Today more than half of CF patients are adults.

Gradual advancements in care carried Burke to the age of 31, when he decided to aggressively push the disease’s limits.

“I started running. My brain likes to go big. I wanted to do the hardest thing I could think of, and that was to run a full marathon. I wanted to check CF where it hurts, mentally and physically,” he said.

As he “stacked on miles,” he felt stronger and coughed less and less as the exercise assisted other treatments in clearing his lungs.

“Running got me mentally focused on something positive and physically challenged me to take my medicine better, do the treatments better and go to the doctor more often,” he said.

Burke pushed through a running career that included marathons (26.2 miles), half-marathons (13.1 miles) and a 70.3-mile Ironman triathlon – a one-day race consisting of a 1.2-mile swim, 56-mile bicycle race and 13.1mile run.

Life-changing treatment advances continued to arrive, especially CF modulators that correct a malfunctioning protein caused by genetic defects.

“My lung capacity in 2001 was 80 percent,” he said. “In 2019 it dipped to 68 percent. In 2020 my lungs returned to 80 percent.” He credits the recovery to the CF modulators and the early care he received.

Burke, now a motivational speaker and executive coach, credits his early care at SSM Health Cardinal Glennon for preserving much of his lung function until the modulators came along. Also, he said, “My mom and dad did my postural drainage therapy every night for years. They never missed a doctor’s appointment or all the pills.”

Before his father died, Burke asked him to describe his experiences at the hospital.

“My dad said there was one word to describe Mary Ellen – ‘love.’ For an old-school guy to say that, I think it speaks volumes. They knew we could count on her.”

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Dear Friends,

Shortly after my mom and dad, George and Vickie, exchanged vows in the fall of 1963, Dad announced that he wanted to change careers. He wanted to start his own company and decided to purchase his first gas station in 1965. Remember, back in the 60s and 70s, service stations (as they were called) offered Full Service, which meant my dad greeted every customer, pumped their gas, washed their windshield and made change with the old-fashioned change-maker on his belt.

As the business grew and more stores were acquired, our family grew as well. My brother Greg was born in 1966 and I was born in 1971. The business and us boys kept them very busy, but dad made time to coach, and even sponsored our little-league baseball teams. Dad was excited to bring us boys into the business, often putting us to work around the stores on weekends picking weeds, emptying trash and cleaning up. As Greg and I grew, we took on greater responsibility, and after our college days, we worked full-time in the family business.

When my brother Greg passed in 2002 after a long battle with Crohn’s disease, Dad and Mom turned their focus on helping find a cure for this disease, having organized an annual golf fundraiser in Greg’s memory, which has raised over $1,000,000 for Crohn’s and Colitis education and research.

Today, they have expanded their charitable efforts and created The Greg Eble Memorial Foundation to honor Greg. That foundation now supports several local charities, including Crohn’s and Colitis Foundation and SSM Health Cardinal Glennon Children’s Hospital through the Homers for Health campaign.

Since 2015, Petro-Mart has raised more than $180,000 to benefit the kids and families at SSM Health Cardinal Glennon.

Thank you,

Grant Eble, President Western Oil

George and Vickie Eble with Granddaughter, Madison Eble (Greg’s Daughter)

Petro-Mart supports Homers for Health in convenience stores around St. Louis

Children’s Foundation

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