Lindsey and Stefan Barth of Shawnee, Kansas, are the proud parents of a nearly 3-year-old girl who loves bright colors, pop songs and kisses from her mommy and daddy.
“Penelope brings an amount of joy to our life that I didn't really think was possible,” Lindsey said. “I think all parents find that. But with her, it's different — because we treasure every little thing that she does.”
Born early and tiny, Penelope arrived at 26 weeks weighing just 1 pound, 11 ounces. She spent her early days in a neonatal intensive care unit where she grew physically but missed many developmental milestones. It took lots of questions, deep internet searches and nearly a year of doctor’s appointments to fully understand Penelope’s challenges.
“Penelope has what's called severe intractable epilepsy, meaning it can’t just be treated by medication,” Lindsey said. “And despite all that we do to manage her daily care, Penelope’s never had a seizure-free day.”
With their daughter’s health needs becoming clearer, Lindsey and Stefan set out to create the most inclusive life possible for Penelope. Their goal is to make sure she’s receiving the care she needs in a loving, family environment.
“Penelope's care is 24/7, and there's not an option to walk away from her because it's so critical,” Lindsey said. “So, we have a little mini-ICU that we're running on a day-to-day basis. But to us, it's really important to keep it a home — just like anybody else’s.”
Balancing Penelope’s needs with their own
Besides Penelope’s medical equipment and the comings and goings of in-home nurses, the Barth’s home is like any other in their Kansas neighborhood. There’s an energetic Boston terrier named Marvin who begs to play fetch, walls decorated with framed family memories and baskets full of books and toddler toys.
There’s also a basement gym where Lindsey uses a Peloton Bike+ to work out stress and build the strength she and Stefan will need to keep meeting all of Penelope’s needs.
“I’ll need muscles to do that,” said Lindsey, smiling. “I need to stay strong and healthy for her.”
“I think the Peloton Bike allows Lindsey to have the flexibility to do that,” Stefan said. “She can
just pop on for 20, 30 minutes and get a quick workout.”
RELATED: Peloton collaboration helps members with workouts that fit their schedule
Lindsey first discovered Peloton through a benefit offered by her employer, UnitedHealth Group, which gives access to a Peloton App Membership at no additional cost. It connects her to thousands of live and on-demand fitness classes, including strength, yoga, cardio and meditation.
In addition to UnitedHealth Group employees, UnitedHealthcare offers Peloton App access to millions of health plan members and participants at no additional cost.
“I really loved the Peloton App,” Lindsey said. “I was able to stream it onto our TV in the living room, which is where we have most of Penelope's care. I could turn on the TV and start a 15-minute stretching session or a short workout that didn't require any weights or anything like that.”
Along with the Peloton App Membership, Lindsey and eligible UnitedHealthcare members also get preferred pricing on select Peloton equipment, including the Bike, Bike+ and Tread.
Since Lindsey enjoyed the Peloton App so much, she decided to buy the Bike and try cycling classes.
“Once I got on the Peloton Bike, it was pretty addicting,” said Lindsey, laughing. “The screen is big and bright, really high-tech. I found different trainers that I really liked and having it in our basement where I'm able to just ride at my convenience is super important.”
Pedaling even further for Penelope
Her Peloton Bike+ and classes have helped Lindsey shed some of the weight she gained during the COVID-19 pandemic and manage the daily stress that can come with caring for a toddler with special medical needs. She’s even found a way to turn biking into fundraising for epilepsy research.
“I wish I could keep up with her,” Stefan said, laughing. “It’s pretty inspiring.”
This summer, Lindsey raised more than $700 by biking more than 126 miles — a number representing the 1 in 26 people who will get epilepsy in their lifetime.
“The challenge made me have a different perspective,” she said. “I thought, ‘I'm not taking time away from Penelope. I'm doing something for her, but I reap the benefits of it, as well.’”
Lindsey said perspective like that is easier to come by these days, thanks to Penelope.
“She’s so brave and courageous,” said Lindsey with a smile, while looking at Penelope. “She shouldn't have to endure everything that she goes through, but she does it — and does it like a rock star. We say that all the time, ‘She's a rock star.’”
The Barths said Penelope fills their home with love and gives everyone she meets a new way to recognize and appreciate simple blessings that may have otherwise been overlooked.
“I have the ability to move my body,” Lindsey said. “I was given that gift, the ability to move, and I have to keep up with it — for me and Penelope.”