“I can’t even remember what it was like not to have diabetes,” said Dana Davis, executive director of the Children’s Diabetes Foundation. “It was always just a part of who I was, and I think an important part because I don’t know who I’d be without having this disease.”
Davis, the youngest of Marvin and Barbara Davis’s five children, was diagnosed with Type 1 diabetes when she was seven years old.
Type 1 diabetes, also known as childhood, juvenile or insulin-dependent diabetes, is an auto-immune disease that leads to the destruction of cells in the pancreas, which normally produce the insulin needed to regulate blood sugar. Type 1 diabetics must monitor their blood sugar levels regularly and take artificial insulin throughout the day. If not properly controlled, serious complications such as blindness, kidney damage and amputation can occur. There is no cure for diabetes.
Because there wasn’t a dedicated diabetes clinic in Denver, Mr. and Mrs. Davis took Dana to the Joslin Clinic in Boston. They were impressed by Joslin’s specialized care, but Dana hated being away from home. On the plane ride home, her mother started dreaming up a plan for a diabetes center in Denver. She envisioned a place where all children with diabetes could come and access a world-class clinic, regardless of their ability to pay.
No One Turned Away
Her father, Marvin Davis, donated the funds for the building, which was then located at Ninth Avenue and Colorado Boulevard. He named the center the Barbara Davis Center for Childhood Diabetes after his wife. In May 2005, the building was relocated to the Anschutz Medical Campus in Aurora and today serves more than 6,000 children and young adults, 35 percent of whom are either uninsured or underinsured. “No one is turned away,” says Dana Davis.
Dana decided to return home to Denver after 30 years and serve as the executive director of the Children’s Diabetes Foundation, the fundraising arm of the Barbara Davis Center, and the same foundation her parents started in 1977 as a result of her diagnosis. “I’ve always felt that my disease has guided me to where I am supposed to go,” she says. She has served as executive director for the foundation for the last two years.
Her mother, Barbara Davis, still actively fundraises for the Children’s Diabetes Foundation. “She’s 85 and doesn’t slow down at all. It’s incredible what she can get done!” says Dana. She continues to chair the biennial Carousel of Hope Ball (Carousel Ball), which she introduced in 1978, a year after the foundation launched. The Ball was Frank Sinatra’s idea— he told Barbara Davis to throw a party and he would sing and help raise money for the hospital. In October, The Carousel of Hope celebrated its 30th anniversary with a star-studded gala at The Beverly Hilton Hotel in Beverly Hills, California, honoring music legend David Foster, Jane Fonda, Sherry Lansing and Sir Sidney Poitier, who received the Inspirational Lifetime Achievement Award. To date, The Carousel of Hope has raised over $100 million for the Barbara Davis Center.
“My mother and I work very well together,” says Dana Davis. “She had this incredible idea and she is still this amazing force with raising the money and because I have the disease, I have a different perspective. I am able to be more of a patient advocate.”
As executive director, Dana is charged with moving the nonprofit in a new direction—less focus on special events and more effort on raising awareness about The Barbara Davis Center and about diabetes in general. “We want to continue the Carousel Ball here, but also find other ways of raising money, engaging people and raising awareness. We are one of the two top centers in the United States and some people don’t even necessarily know about us. I would really like to broaden that horizon and make sure people know about us and what we’re doing.”
In addition to raising funds to support the Barbara Davis Center, the Children’s Diabetes Foundation also lends critical emotional and financial support to patients and families living with diabetes. “Diabetes is such an expensive disease, so even when medical costs are covered, there are so many other expenses. We try to support the entire family. Besides our Helping Hands and Holiday Assistance programs, we’re trying to figure out a babysitting program. In the first two years after being diagnosed, parents don’t even have a date night. They are too afraid to leave their child with somebody who might not understand a CGM (continuous glucose monitor) or a pump and how they work,” Davis says.
Holly Lewkowiez remembers how daunting it was when her son, Ezra, was first diagnosed when he was 3 ½ years old. “[My husband and I] both come from a medical background and we didn’t really know about diabetes. You really don’t know how dangerous it can be and how scary it can be until you’re in it.” She remembers how Ezra used to hide under the kitchen table when he knew it was time for his insulin injection. “Mommy, please don’t hurt me anymore,” he would plead. “That’s enough to make you cry,” she recalls. Lewkowiez quit her job as a nurse to care for Ezra full-time. She monitors his sugar levels, counts the carbs he eats, calculates the insulin he needs, and administers his injections. She used to make daily trips to Ezra’s school to check on him, afraid of what could happen if she wasn’t there.
Her worst fears were realized when he was four years old. She went to school and found him collapsed on the ground and no one had noticed. “They didn’t seem to get it,” she reflects. “He just needed some juice. There’s a misunderstanding that diabetes only affects the big, overweight guy ordering his medical supplies on TV. You can lose a kid if they go too low.” After the incident, Lewkowiez asked the private school her son attends to put emergency juice boxes in classrooms and on the playground. She was met with resistance. “Why not?” she asked, “If it could save a kid’s life?” The school relented, but she is still pained by the experience.
“It’s scary for me. I understand that it was scary for them, too,” she says. “But they need to know this stuff. This disease is on the rise. Schools will have more and more children with diabetes.”
Dana experienced ignorance about diabetes, too. “I had to go to the hospital recently and I had my CGM on and they didn’t know what it was. How could I have been in a hospital and nobody had seen this before? It’s a really common tool for diabetics.” She would like to change this. “There is so much gray around diabetes,” Dana says. “People think, ‘Oh, my grandmother died of that.’ We want to focus on making sure people are informed, especially in schools. People need to know the symptoms of diabetes. Diabetes is on the rise and it’s on the rise not because people are eating too many donuts. It’s an epidemic and people need to educate themselves about it.” It is estimated that one in three babies born today will develop diabetes.
Ezra is now ten years old and has been a patient at the Barbara Davis Center since his diagnosis. “They make a concerted effort to make him feel as normal as possible,” says Lewkowiez. Ezra was recently invited to his first sleepover, “which never happens because of his diabetes,” Holly adds.
Dana Davis has a name for parents like Holly; she calls them “warriors. It’s sometimes hard for families to feel like they’re doing it right. It’s really important to know that other people are going through it too. I think one of the biggest things is having support and knowing that you’re not alone.”
Mission: To raise funds to support the Barbara Davis Center for Childhood Diabetes, where thousands of patients of all ages from all over the world receive the finest diabetes care available.
Contact information: Children’s Diabetes Foundation, 4380 S. Syracuse St., Suite 430, Denver, CO 80237; 303-863-1200; www.childrensdiabetesfoundation.org.
Main Programs: Helping Hands, Holiday Assistance programs, Brass Ring Luncheon and Fashion Show, High Hopes Golf Tournament and an annual diabetes-friendly Halloween party.
How you can help: visit www.childrensdiabetesfoundation.org and go to the “Ways to Help” page.
Upcoming events or fundraisers: On March 4, 2017 the foundation will host its first Patient Forum at the Denver Marriott; The Carousel of Hope in Denver, October 2017.
BIO: Rachel Engleberg spent a decade in New York City producing documentaries for ABC News, NBC News and The New York Times Television. She is now a freelance writer and mother. She lives in Denver with her husband and three children.
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