Home Runs For Life: Lorelei Lovelady
One step down, another step down and pretty soon Lorelei Lovelady is making rapid progress down the hall on a pedal walker at Genesis Outpatient Pediatric Therapy (GOPEDS).
Step-by-step Lorelei is looking like a typical kindergarten student. She seems carefree and more focused on fun than on health issues. She has been through a lot at a young age. The ups, the downs and the progress on the pedal walker is parallel to Lorelei’s story.
Lorelei seemed to be a “colicky’’ baby. She was often fussy, according to her mother, Megan Lovelady.
“To be honest, that was what we thought. We thought she had colic but she was not eating as much as she should and she was vomiting a lot. We thought maybe she had a food allergy,’’ Megan explained.
After just one trip to the emergency department at Genesis Medical Center, Silvis, the shocking results of a blood test indicated kidney failure. Lorelei was only six months old.
That blood test led to a LifeFlight to OSF in Peoria and a diagnosis of Primary Hyperoxaluria Type 1 (PH1), which began an odyssey of tests, long hospitalizations, hemodialysis, liver and kidney transplants, and multiple therapies over the past four years.
Rare Genetic Disorder
Only one of three million Americans are diagnosed with PH1, a rare genetic disorder resulting from defects in different enzymes, leading to overproduction of oxalate in the organs.
Lorelei wasn’t uncomfortable because of colic. She was producing kidney stones because of the overproduction of oxalate. Anyone who has experienced kidney stones can imagine a baby’s pain of multiple stones lodged in her kidneys and liver. The stones were affecting the function of both organs. Without major medical interventions, Lorelei’s life was threatened.
“We had an extremely long road ahead of us but God was in the driver’s seat,’’ Megan said in a social media update at the time.
Mayo Clinic referred Lorelei to the Ann and Robert Lurie Children’s Hospital in Chicago. For 18 months, Lorelei and Megan were living in the Chicago loop in the Ronald McDonald House in between hospitalizations and appointments. The family relied on a deep Christian faith, friends, relatives and a countless number of health professionals caring for Lorelei.
If you have parked in downtown Chicago, you understand the cost of owning a car and storing it. Megan did not have a vehicle and relied on public transit. John Lovelady and Lorelei’s older brother, Silas, would arrive nearly every weekend to get the family back together.
Megan Donates Kidney
Lorelei had life-sustaining dialysis nearly every day in Chicago but she needed a new liver and a new kidney. The liver transplant came first in July 2017. Megan was then approved to donate one of her kidneys in Dec. 2018.
Once Lorelei’s health stabilized following the liver transplant, she was able to move dialysis treatments to the University of Iowa five days a week.
“It has been a lot. It has been a blur. You take one day at a time and rely on your faith,’’ Megan said. “We don’t know what Lorelei’s future will be but we just keep going.’’
As she recovered from the transplants, Lorelei first had Genesis feeding therapy and physical therapy at home in East Moline. She also had physical therapy, speech therapy, occupational therapy and feeding therapy on site at Genesis Outpatient Pediatric Therapy (GOPEDS) in Bettendorf. She has now “graduated’’ from the therapies and has started kindergarten.
On a recent day, Lorelei returned to GOPEDS to work with therapist Kim Utsinger, who started working with Lorelei in the family’s home. Lorelei navigated a climbing wall and scooted on the pedal walker.
“You would never know this little girl had such a rough start,’’ Utsinger said. “She was so sick. Now she looks so healthy. It’s an amazing difference.’’
The Quad Cities River Bandits recognize Genesis therapy success stories with their Home Runs for Life celebrations. Lorelei and her family will have their night at the ballpark on Sept. 17.
For more information about GOPEDS programs, go to www.genesishealth.com/gopeds. To schedule an appointment, call (563) 421-3497.