When Kelsey Bastian hears reports that the spreading coronavirus is likely dangerous “only to the elderly and those with underlying conditions,” she looks at her little boy, Wally.
Two-year-old Walter “Wally” Bastian, who almost always has a smile on his face, battles a rare disorder called Barth’s Syndrome. Diagnosed at 8 weeks old, Wally had a heart transplant in February 2019 at Lurie Children’s Hospital in Chicago.
The anti-rejection medication Wally takes plus having Barth’s, a rare metabolic and neuromuscular genetic disorder, puts him squarely in the high-risk category of the new virus, which is something his parents, Kelsey and A.J., must think about every day.
“I just wish people would take it seriously,” said Kelsey, a nurse at UnityPoint Health-Methodist in Peoria who lives in Chillicothe. “People say, well, if I get it I’ll survive. They look at it as just being like a cold or the flu. But for people like Wally, he could get really sick. It could essentially kill him. That’s terrifying,”
The Bastians get frustrated with those who aren’t following Gov. J.B. Pritzker’s statewide stay-at-home order issued from March 21 through at least April 7 to maximize containment of COVID-19, the infectious respiratory disease caused by the new coronavirus.
“The whole reason to stay home is not necessarily so you won’t get it, but to stop that spread so we can be done with this whole mess, especially with the long incubation period it has,” Kelsey said. “It may not be a big deal to you, but this is everything to us. Wash your hands and just stay home.”
Kelsey and A.J. understand the need to leave home for work that is deemed essential as both are employed in public service jobs. Kelsey works on the mom/baby floor of a Peoria hospital, while A.J. is a police officer for the city of Chillicothe.
“I struggle with am I doing the right thing by going to work every day, but we don’t have that option to just stay home,” she noted.
While Kelsey does worry about possibly bringing home germs from the hospital, the couple takes many precautions when they get home from work.
“Before we even get in the door we strip down, wash our hands and jump in the shower. We have a pretty good system down. We spray our shoes and everything with Lysol. It’s a lot more difficult to try to stay germ-free now, that’s for sure,” she said.
Because of their work schedules, Wally is usually sleeping when they each get home, so they don’t have to try to explain to their toddler why they can’t immediately hold him when they walk in the door. “That’s a blessing, at least,” Kelsey said.
Other precautions the family is taking include not wearing shoes in the house, giving Wally a bath every day, changing his sheets daily and frequently wiping down everything in the house. “I’m constantly spraying door handles and light switches and wiping down the counters,” Kelsey said.
“Even in our cars, we’re constantly wiping down our steering wheels. When we go to the gas pump, we wear gloves. When we go to the grocery store, we wear gloves. We haven’t really been touching other people, and we’re trying to stay further away. We’re definitely not shaking hands with anybody,” she added.
Many of the precautions are things the family has always done because of Wally’s health issues and susceptibility to germs, but Kelsey said they’ve “definitely amped it up a lot.”
Wally occasionally went with his parents to the grocery store or out to eat, but those infrequent trips have now stopped completely.
“Wally is only ever at our house or at my mom’s house because she babysits him while we work,” Kelsey said. Her mom, Shananne Buehler, keeps a bottle of hand sanitizer at the front door and follows the same safety precautions as the Bastians.
Kelsey also put out a plea for people to stop hoarding things, such as hand sanitizer and toilet paper.
“It’s so frustrating because we can’t get what we need to keep Wally healthy,” she said. “Please think before buying out the stores. You don’t need 100 bottles of hand sanitizer.”
Meanwhile, Wally is happy and mostly unaware of all that is being done to keep him safe, Kelsey said.
“Wally’s good,” she reported with a smile. “He just started crawling up on all fours. And he’s really close to pulling himself up to stand by himself.”
Wally has had a lingering cough since before the coronavirus hit that his doctors are aware of, but they hesitate to bring him in for a chest X-ray for fear he’ll be exposed to something worse.
“It’s always been upper respiratory. He’s had the drainage and the coughing, but I know he’s getting his molars. And he’s had it for so long and hasn’t gotten any worse. But I always worry,” Kelsey said.
Wally is due for his annual check-up with his Chicago doctors in May, and the Bastians just hope and pray it will be safe to take him then.
“We also have our Barth’s Syndrome conference that’s supposed to be happening in Florida in July. I’ll be heartbroken if they cancel that,” Kelsey said. The disease is so rare that it only affects about 200 people in the world, almost exclusively males.
“We’re definitely living in different times for sure and it’s really scary,” Kelsey said. “But I try not to worry about it too much because if I think about all the what-ifs, it will just throw me into a tailspin. We just do what we can do, and hopefully it will all work out.”
To follow Wally’s journey, visit the Wonderful Wally Facebook page at www.facebook.com/WonderfulWally-431173010753745.