Oak Harbor Lady Rockets rookie softball skipper Chris Rawski has felt blessed to work alongside some pretty inspirational people throughout his life, from young superstar athletes like Simone Eli, Shana Szypka, Olivia O’Reilly and Samantha Durivage to championship coaches such as the legendary Tom Kontak, Art Eli, Andy Szypka, and Jim Zoltowski.
Still, his greatest inspiration comes from his and wife Alisa’s No. 1 and No. 2 “draft picks,” Morgan and Wyatt Rawski.
At ages 6 and 3 respectively, the young Rawskis can’t knock down a game-winning three-pointer at the buzzer yet. Not even old enough to play tee ball this summer, their hands are still too small to even grip a softball.
|Chris and Alysa Rawski say they are inspired by young Morgan
and Wyatt, who keep smiling despite an ongoing struggle with
Shortly after they were born, Morgan and Wyatt were each diagnosed with Complex IV Mitochondrial Disease, or “Mito,” a serious condition that inhibits the mitochondria in a human cell (often referred to as “cellular power plants”) from producing upwards of 90 percent of the energy a body needs to function and thrive.
Those with Mito can experience swallowing difficulties, severe gastro-intestinal problems, seizures and strokes. The disease can lead to blindness, deafness, muscle failure and heart, kidney and liver disease.
Despite it all, Morgan and Wyatt just keep on swinging, looking this most formidable of opponents right in the eye, singing, playing, laughing, and winning in a game with much-higher stakes.
“These are two of the toughest kids, and they are just so brave,” Chris said, sharing that he often thinks all the MRIs, the CAT scans, the seemingly-endless blood tests and the miles slogged back and forth to the Cleveland Clinic to meet with therapists and specialists have worn harder on his and Alisa’s minds and bodies than they have on either little Morgan or Wyatt.
“Our kids just don’t realize that life can be different,” agrees Alisa, a former employee of Genoa Bank, who in May took a job with Samborn, Steketee, Otis, & Evans, or SSOE, in Toledo. “This is all they know, and they just accept this life as their own. Throughout it all, they’ve just remained so good-natured. They are absolutely amazing kids.”
“But getting people to understand that just because our kids look perfectly healthy, does not mean that they are perfectly healthy – that’s been tough,” adds Chris. So, too, has been trying to learn about mitochondrial disease and understanding its complexities, as well as what the long-term implications can be for Morgan and Wyatt.
“But Morgan and Wyatt, they are just so strong,” he said. “They just keep on smiling. They just keep on living. My wife and I, we’re just ordinary people. It’s our kids who have taught us about life. They’re the true inspirations in our life. They’re the heroes.”
Shortly after she was born June 28, 2006 with exceptionally-low muscle tone, low energy and an inability to take in any kind of nourishment on her own, Morgan was forced to have a an NG (nasogastric intubation tube) to ensure she’d get the nutrition she needed to survive and grow. The NG tube can also be used to administer drugs.
Nine long months and a battery of tests later, Morgan would face a surgery during which doctors inserted a gastric feeding tube. She also underwent a muscle biopsy, allowing doctors to examine tissue for structure and the telltale ragged-red fibers that often point to mutations in the mitochondria. The official diagnosis of Complex IV Mitochondrial Disease came on her first birthday.
In February 2008, the Rawskis began a series of treks from their home in Toledo to the Cleveland Clinic, where the facility’s Feeding Team began the task of teaching Morgan how to eat on her own. In April 2009, all the hard work and the exhausting weekly visits paid off and the feeding tube was removed.
A little less than a year later, the then-3-1/2-year-old was released from the feeding program, though Chris and Alisa Rawski hardly had time to bask in their little girl’s victory. Morgan’s baby brother, Wyatt, was exhibiting similar signs of Mito.
Having learned some tough lessons from little Morgan’s ongoing fight against the disease, Chris and Alisa decided against putting their little boy through many of the grueling tests and procedures that his big sister had endured. After all, it was reasoned, Wyatt was born with the same low muscle tone, low energy and the inability to eat, all of which led to a G-tube being surgically placed in his tummy at 3-12 months of age. There would be no intrusive muscle biopsy for Wyatt, and so very shortly after his birth, he, too, was diagnosed with Complex IV Mito.
Today, nearly six years after their epic odyssey first began, victory once again belongs to the Rawskis, as in late summer of 2011, Wyatt, too “graduated” from G-tube feeding, with “commencement” from the same Feeding Disorders Program at CC.
Sure, “Team Rawski” still faces its fair share of “bad days,” as well as some particularly stiff challenges. As of today, there is still no cure for Mito. Both sister and brother are still on a scrupulous daily regimen of medications to boost their energy levels. They also attend therapy and work closely with specialists to help make their young bodies stronger and stronger. And not every day is a good eating day.
And since Mitochondrial Disease is a genetic disease, there is fear that Morgan could one day pass it on to her own children (the mother carries the abnormal gene for Mito).
Still, make no mistake about it, the “Team Rawski” highlight reel film is a heck of a lot longer than the footage on the “lowlight” reel.
To find out more about Mito, or to learn how you can do your part, log onto umdf.org.