A beloved diabetes camp for kids in Georgia has been around for 37 years, founded by a woman who was diagnosed with type 1 as a girl almost seven decades ago.
They call it Camp Ivy, named in honor of founder Ivy Lockett, who started the camp in the 70s and was diagnosed herself as a 12-year-old girl in 1949. And the hundreds of children who've attended the camp through the years are fondly known as Ivy's "Sweet Kids," no matter what age they are now.
This past 2014 season was a sad one, though, as it was the first time in more than three decades that the renowned camp didn't happen. This would've been the program's 37th consecutive year.
On the Children With Diabetes website where camps are listed, parents searching for the longtime beloved Camp Ivy found only this short, sad note: "Camp Ivy will be discontinued for 2014. The camp director hopes to restart it in 2015."
It's been a blow for many in Georgia and beyond, especially those who are actively involved with diabetes camps nationwide and have looked to Camp Ivy for inspiration through the years. Not only for what the camp is and does, but for the simple fact that Ivy Lockett herself is a veteran type 1 who brings a level of understanding and charm to the Southern D-Camp.
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We talked to Ivy by phone recently -- who absolutely qualifies to be part of our ongoing "Amazing Advocates" series -- and she basically told us that despite recent personal struggles, she's not giving up!
Ivy has a tough time going into specifics, but says life started getting her down and she took that as a sign that it was time to give up Camp Ivy. Soon after making that decision, those in her Georgia D-Community and many of the kids and parents let her know how much they were sad to hear the news, and they hoped to see Camp Ivy return next year.
"Something happened, and I just felt so defeated," she says. "But the kids were heartbroken, and they asked if it would happen next year. I've missed it so much, and now I tell them: 2015 is going to be a new year, and I will start camp again."
The Early Years
Ivy says the inspiration to start a diabetes camp -- which the children attending dubbed Camp Ivy -- stemmed from how little Ivy she knew about diabetes growing up. For most of her years growing up, Ivy says there were no support groups or group activities, and even very little research that she knew of in her area.
Remember that back when Ivy was diagnosed, times were different. Those were the "archaic, primitive dark days of diabetes" as she describes them, and in those days patients had to boil their own syringes at home to sterilize them, and there was only animal insulin, which had a less-than-ideal peak curve. Growing up, she wanted to go into the insurance industry but remembers doors being shut professionally when she told them about her type 1 diabetes.
She ended up working in the public relations department at the Keebler plant in Atlanta, and one day she found out she was being laid off. Though she had a chance to keep the job by moving to Ohio, she wanted to stay in her home state of Georgia. (Her husband is retired from Delta Airlines where he worked as an air traffic controller.)
"I was down and depressed about life and my diabetes and that's when I thought, 'The good Lord is using me to help others.' I called my dad and told him I'm going to have a camp for children with type 1, and I've kept pushing to do that ever since."
By that time, Ivy had already delved deep into advocacy. She had founded the Fayette County Diabetes Association and helped provide resources similar to what chapters of the American Diabetes Association have offered diabetics. For years, Ivy gathered a group of people for monthly meetings from the south and metro Atlanta areas of the state. They conducted classes to help educate people, and from everything Ivy's learned about diabetes through the years she has become a nationally-sought speaker who's attended events throughout the U.S.
People in her network were always asking about diabetes activities for kids, and she saw so many children who just didn't seem to know much about life with diabetes. That's what really sparked her passion about starting a camp.
Early on, Ivy says she didn't like how the American Diabetes Association would take kids from Georgia to the ADA-sponsored camp in North Carolina; she wanted kids to experience the beauty of her own region. And she didn't like how much ADA camp cost to attend, as it seemed like only the wealthier kids and families could afford to go. So, she pushed to create her own camp based in Fayetteville, GA, where she's lived for four decades.
In the first year of camp in 1977, Ivy says she had 10 kids attend. Now, hundreds come through her camp each summer. Mostly, they are ages 3 or older -- though she says the youngest has been a baby, with a parent staying overnight. Typically, the child has to be old enough to operate an insulin pump if he or she is using one.
Kids have come all the way from Florida, New York and other states to spend a week in the rural setting where they can swim, play games, hike, learn about trees, and just enjoy nature -- all the while having diabetes along for the ride.
An important part of camp is that "Miss Ivy" (as her "sweet kids" call her) gives it to them straight, without any sugar-coating, so to speak. She's known for talking frankly to the children in plain truths, directly and honestly, in ways that medical professionals may not always do.
Camp Ivy Grows Up
About three years ago, Camp Ivy became an official non-profit -- something Ivy says wasn't needed for most of the years, because she had help from friends and companies who supported the camp financially. But eventually, that help started drying up because everyone started wanting a federal 501c3 number for tax write-offs.
So, each year, she has managed to get enough funding and support to help pay for that year's camp and has rented out a location for the week programs. Originally, she rented the Calvin Center in Central Georgia -- up until about four years ago, when she needed to a quick change of location to accommodate the influx of interested kids. Thanks to a connection from a camper's parent, they moved to Christian-based camp retreat Skipstone Academy to house Camp Ivy and have been hosted there ever since.
The last camp was in July 2013, before this year's unexpected hiatus.
Ivy's Ups and Downs
The 77-year-old says that thanks to modern tech like cell phones, she loves being able to easily keep in touch with her kids.
"I've been to weddings, baby showers, graduations... I get some of my kids call and are boo-hooing in their beer, so to speak. And I stay on the phone with them while they test, and I am not going to hang up until I can hear the change in their voices," she says.
Those connections have meant the world to Ivy, and she finds herself turning to them in times when she isn't feeling the best about her own diabetes. Though she's in excellent health without complications, Ivy says she gets down and needs that peer support too.
In fact, that's where she's been at recently. She's been using an insulin pump for a little over two years and isn't a fan, and though she might be interested in trying a CGM, she can't afford one out-of-pocket and her Medicare won't cover that (but she's learning about the recently-introduced #MedicareCoverCGM legislation and is pushing her lawmakers to support that!).
Her longtime, 40-year endo also retired at the end of June and so Ivy says she's in a transition period while trying to find a new doctor.
Her humor is well intact, without a doubt: "I'm healthy as a horse, and I'm going to live forever," she laughs, echoing what her endo has told her.
No matter what happens next, she knows that Camp Ivy will go on for 2015 and she's already planning for the following summer.
"If I do nothing else in my life, at least I have done this -- something to help other people with diabetes."
All we can say is: Go Ivy!