Endurance, strength and determination. Three qualities that can be found in any champion.
On Sunday, the Columbus Marathon will celebrate its 40th anniversary as runners race around the capital city in a display of all those qualities and more. When they reach the finish line, they will be awarded medals, another mark of a champion.
But while completing a marathon is a tremendous accomplishment worthy of being celebrated, those running the race on Sunday won’t even be the biggest champions on the day.
All throughout the racecourse, runners will see and interact with children at each mile marker. Those children, ranging in ages from 3 to 20, will serve as Nationwide Children’s Hospital Patient Champions, the truest representation of what it means to overcome and persevere, as all champions must do.
And two of them — 8-year-olds Lizzie Swartwout and Bhoomi Manjunatha — are Powell’s very own.
Nationwide Children’s Hospital (NCH) has partnered with the Columbus Marathon since 2012 to raise more than $8 million to support life-saving research and care. Along with the funds being raised, 24 children are selected to make each mile along the way a celebration of true accomplishment and to inspire the racers to just keep going, as they, themselves, have already had to do in their young lives.
Lizzie, a second-grade student at Scioto Ridge Elementary, was born with hearing loss caused by a condition called enlarged vestibular aqueducts (EVA). She wore hearing aids from the time she was 6 months old until she was almost 3 years old when her father, Dan, said he and his wife, Tasha, began to notice a decline in her hearing.
When she was diagnosed with EVA, the Swartwouts were told that Lizzie could experience a further decline in her hearing at any time and for no specific reason whatsoever.
“That was a difficult time, because we didn’t know exactly what to do next,” Dan Swartwout said.
Tests done at NCH confirmed the drop-off in Lizzie’s hearing, and at the suggestion of doctors at NCH, she had her first cochlear implant surgery done in February 2015. Ten months later, she had a second cochlear implant procedure done in the other ear.
Dan Swartwout said that because of the two implants, Lizzie’s expressive and receptive communication skills have been phenomenal, so much so, he said, that her communication skills are on par or even exceed those of children who don’t suffer from hearing loss.
“She’s just doing amazing,” Dan Swartwout said of his daughter. “We’ve been through 143 speech therapies with her speech therapist, Shana Lucius, at Nationwide Children’s Hospital. All sorts of testing, all sorts of evaluations, obviously the two surgeries, and it’s all been part of this path to success that she’s been able to attain. And she’s had a whole heck of a lot of help along the way from Nationwide.”
He added, “The things they have done for Lizzie, it’s truly been incredible to have her where she is now, in second grade, just absolutely thriving academically, socially, and in sports.”
Lizzie participates in a variety of activities such as tumbling, competitive dancing, and basketball, which will serve as the theme for her particular mile — mile 26 — on Sunday.
Asked why it is important to them to take part in the race, Dan Swartwout said, “Lizzie is such a smart, funny, vibrant, kind child. She’s really a child who has no limits whatsoever to what she can accomplish, and I think it’s important to show that despite being deaf and having cochlear implants, she can do anything she wants to do.”
He went on to say, “People who face challenges and kids who face challenges can accomplish so very much, and for us, it’s sharing the story of how hard she has worked. One hundred forty-three speech therapies is a long time and that’s a lot of effort … how she has handled it all and how she has championed through it all and is able to do so many things. It’s wonderful to share that story to other people who are like us, when we didn’t know what was next, when we didn’t know how her life could potentially be limited. And it’s not (limited) because she can do anything she wants to do.”
Lizzie said she is most excited about high-fiving all the runners, meeting everyone, and representing with all the other Patient Champions who have already overcome a lot in their lives. Or, as she best described it, “I’m excited about everything!”
Bhoomi, who has been friends with Lizzie since the two attended daycare together at Teaching Tree Preschool and Early Learning Academy, was born prematurely along with her twin sister. She was diagnosed with periventricular leukomalacia (PVL) when she was just a year old before eventually being diagnosed with cerebral palsy.
Because the disease severely affects her gross motor skills, Bhoomi is unable to do things independently, even easily-taken-for-granted tasks such as using the restroom.
Bhoomi’s mother, Sushma, said there was no history of cerebral palsy in her family prior to Bhoomi, nor had she ever heard of the disease, which has made every step along the way a learning process for her.
Sushma said NCH was critical to helping both Bhoomi, obviously, and her in learning how to help her child along the way.
“They were our go-to person,” she said. “Anything, including the county information and how the county will help her, what diagnoses she needed, the age-appropriate Botox injections, and then she went through SDR surgery … Nationwide has been that resource for me.”
Sushma said it was important for her to have Bhoomi participate as a Patient Champion because it serves as a “treat” for Bhoomi to say she can be a champion while at the same time helping others.
“The part (Bhoomi) was most happy about was able to help other kids similar to her when she was in the hospital,” Sushma said.
Sushma added Bhoomi learned from the gifts and encouragement she received when she was at NCH for six weeks following her SDR surgery, and reciprocating those positive vibes as a Patient Champion during the marathon was Bhoomi’s wish alone.
“She’s a social butterfly,” Sushma said of Bhoomi. “She loves people. She can talk to anyone … she loves to talk and have good interaction and relationships with people. That’s Bhoomi. She’s always happy, no matter what. She does have her days where she is low, but she is back up quickly.”
As Bhoomi is beginning to grow up, Sushma said her daughter is beginning to understand her limitations, which naturally leads to frustration and questions of why she is unable to do all the things her sister is able to do. “It’s going to take some time for her to accept her condition and also grow with it,” Sushma said.
Because this will be Bhoomi’s first experience at the event, Sushma said she wants to use the day as a way of showing her daughter, who has increasingly more questions about her condition, that there are many who are just like her and that she is not alone.
“It’s definitely helping her, that’s how I’m seeing this,” Sushma said. “With Bhoomi, and her twin sister, and me as a working mom, (the marathon) is all an extra effort. But it’s worth it. It’s worth it for her. And it’s worth it to see how we can get involved in the community and also learn from people with similar circumstances around us.”
Sushma went on to say that while Bhoomi, who can be found at mile five Sunday, is a champion already for everything she has overcome, she wants Bhoomi to understand that being a Patient Champion is as much about educating others as it is about herself.
“The way I’m putting it to her is she is giving back to the community, all the people at NCH who helped you,” Sushma said, adding that she also hopes the day will help Bhoomi to work through her own questions and frustrations.
Asked what her message would be to parents and children alike who will go through similar situations or already are going through them, Sushma said, “These kids don’t need sympathy. They need to be empathized and given more opportunities to be independent. Let them think, let them do. It’s okay if they fall once or twice. The third time they will get it.”
To learn more about all 24 Patient Champions or to donate to their cause, visit give.nationwidechildrens.org.