Little girl, big star talk health

Miracle champ named, diabetes center dedicated

4/25/2014
BY TOM HENRY
BLADE STAFF WRITER
  • n6diabetes

    Agnes and Chet Barnes of Toledo speak with Crystal Bowersox at the dedication of the ProMedica Mary Ellen Falzone Diabetes Center. He was Miss Falzone’s sixth-grade teacher and wore a tie tack she once gave him for Christmas. She died in 1978 at age 14.

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  • Carly Kudzia, 3, held by her mother, Heather, is the 2014 Children’s Miracle Network Hospitals champion for Ohio. Carly, who will be 4 on June 19, has progeria, a very rare, fatal, genetic condition characterized by accelerated aging. Her mother says it reminds them to enjoy every minute they get.
    Carly Kudzia, 3, held by her mother, Heather, is the 2014 Children’s Miracle Network Hospitals champion for Ohio. Carly, who will be 4 on June 19, has progeria, a very rare, fatal, genetic condition characterized by accelerated aging. Her mother says it reminds them to enjoy every minute they get.

    Though years apart in age and life experiences, two of northwest Ohio’s most powerful symbols of hope presented their respective inspirational messages of good health Thursday.

    The first was from Carly Kudzia, a tiny, 3-year-old girl from Whitehouse battling an extremely rare disorder since birth called progeria, which causes her body to age 8 to 10 years for every year most people age.

    She was introduced at the Courtyard by Marriott in Maumee as the 2014 Children’s Miracle Network Hospitals champion for Ohio.

    Next up was recording artist Crystal Bowersox.

    She’s a former American Idol finalist who grew up in Ottawa County’s Elliston, attended the Toledo School for the Arts, and made a name for herself performing as a singer-songwriter at area taverns before hitting the big time.

    Ms. Bowersox has been a Type 1 diabetic since age 6.

    She helped raise the profile of the disease as she attained her sudden fame on American Idol, especially after former American Idol judge Simon Cowell lauded her for a stunning performance that came following an unexpected night in the hospital induced by diabetes-related stress.

    She was a featured guest at Thursday’s dedication of ProMedica’s $15.6 million Mary Ellen Falzone Diabetes Center, 2100 W. Central Ave.

    Agnes and Chet Barnes of Toledo speak with Crystal Bowersox at the dedication of the ProMedica Mary Ellen Falzone Diabetes Center. He was Miss Falzone’s sixth-grade teacher and wore a tie tack she once gave him for Christmas. She died in 1978 at age 14.
    Agnes and Chet Barnes of Toledo speak with Crystal Bowersox at the dedication of the ProMedica Mary Ellen Falzone Diabetes Center. He was Miss Falzone’s sixth-grade teacher and wore a tie tack she once gave him for Christmas. She died in 1978 at age 14.

    The missions of the relatively unknown little girl and the highly recognizable rock star are different, but have similarities.

    In both cases, it's all about public outreach — getting people to understand and take health matters more seriously.

    Carly’s a cuddler, a little girl who embraces her mother and father, Heather and Ryan Kudzia.

    She's shy and bashful around strangers, especially when several of them are taking photographs of her in the meeting room of an unfamiliar hotel.

    But her mom reports she’s 180-degrees different around her house — playing with dolls, laughing, painting, surfing the Internet on an iPad, riding her tricycle, jumping on her family’s trampoline, making crafts, and generally enjoying life.

    “She thinks like other kids her age. She has the energy of three kids,” Mrs. Kudzia said, going on to add that “she’s funny, she’s articulate, she’s smart.”

    Just not around strangers.

    That's OK.

    Mom spoke up on her behalf and is confident Carly will eventually ease into the role of ambassador for the seven Ohio hospitals that are part of the Children’s Miracle Network Hospitals. They include Mercy Children’s Hospital, where Carly has been seen.

    Progeria is so rare it occurs in only one of every 8 million births.

    The disease ages its victims so quickly their life expectancy is not expected to go beyond their early teens, Mrs. Kudzia said.

    “It gives us a warning to enjoy every single moment and every single second,” she said.

    Carly also steals the hearts of her twin brothers, Grant and Garrett, now 15.

    Ms. Bowersox told The Blade before her scheduled speech at the dedication event that diabetes has made her rethink her life priorities and eating habits, especially in recent years as she has juggled the challenges of fighting the disease with those of parenthood and relationships and touring, writing music, and recording.

    She jokingly said that keeping her diabetes in check is one of her “three or four full-time jobs.”

    Ms. Bowersox said she was pleased by ProMedica’s new facility, the first of its kind in northwest Ohio.

    It brings a multitude of diabetic services — doctor visits, nutrition advice, pharmacy supplies, workshops, and training sessions — under one roof.

    “I think combining all of the resources into one central location will benefit the community greatly,” Ms. Bowersox said.

    “Diabetes can be a real lonely disease,” she added. “Unless you have a community of people behind you, you can feel alone. It’s something that, as an adult, makes me look back at how I used to be.”

    Dr. John Brunner, the center’s medical director, said it boggles his mind that people don’t take diabetes more seriously, especially given its rising prevalence and its ability to cause blindness, heart disease, and kidney failure.

    “Diabetes is kind of the Rodney Dangerfield of medicine,” Dr. Brunner said. “People don’t seem to recognize it as a threat.”

    He said his goal is to put Toledo “on the map for diabetes care.”

    The 55,000-square-foot center opened Feb. 3.

    The center is named in memory of Mary Ellen Falzone, a South Toledo teen who died of diabetes complications in 1978 at age 14.

    The Falzone family donated $1 million to help defray the $15.6 million cost.

    Mary Ellen, better known as Meme, was a bubbly, lively spirit who continues to inspire family members, said her sister, Sue Falzone Jablonski of Columbus.

    “Nothing, even diabetes, should stop you from pursuing your dreams,” she said.

    In Lucas County, about 13 percent of residents have diabetes, said Randy Oostra, ProMedica president and chief executive officer.

    That’s thought to be significantly higher than the national rate, which is estimated at about 8 percent.

    Diabetes is the nation’s sixth leading cause of death, he said.

    ProMedia expects to see 40,000 to 50,000 visitors at the center each year for about the next 50 years.

    Contact Tom Henry at: thenry@theblade.com or 419-724-6079.