As children grow out of the newborn phase, the fortunate majority of parents are able to leave certain worries behind.
The urge to check on the baby’s breathing, the dread that comes with each fever, those stubborn, sleep-stealing concerns over immediate health subside as the child gets older. Kids being kids, one set of worries is of course replaced by another, and another after that, but at least mom and dad no longer feel the need to stay close and hover.
Not so for parents of children with Type 1 diabetes.
Type 1 diabetes can lead to a host of related health complications as a child gets older, or it can turn what is normally considered a routine illness into something life threatening. It is a lifetime hardship that means daily rounds of shots, blood sugar checks and diet management.
Type 1 diabetes never lets up and never takes a day off. Neither, then, can the parents.
“It is my hope that there will be a cure soon and all Type 1 diabetics can go to sleep at night not worrying about sugar levels and insulin needs,” says Robby Vogel, former board member and president for the Arkansas chapter of the Juvenile Diabetes Research Foundation. “I feel for everyone, including the parents of children affected by Type 1 diabetes. May there be a cure found soon.”
Vogel and his wife Laura Beth are chairing this year’s Imagine Gala, JDRF’s most important fundraiser. The event, slated for May 11 at the Little Rock Marriott, will honor Isaac and Morgan Smith with the JDRF Living and Giving Award for their efforts supporting the organization’s work.
“Both of those couples have been really, really engaged with us for quite some time,” says JDRF Executive Director Susan Tull.
Robby Vogel is CEO of beverage companies Golden Eagle of Arkansas, Eagle Distributing and Arkansas Wine and Spirits. He is active in several community initiatives, including being an appointed member of the Little Rock Planning Commission.
Laura Beth is involved in a number of philanthropies and serves as a board member and membership co-chair of the Old State House Museum Associates.
Isaac Smith is president of commercial real estate agency Colliers International. He is a graduate of the Leadership Little Rock and Leadership Arkansas programs and was among Arkansas Business’ “20 in Their 20s” and “40 Under 40” recognitions for influential people and business leaders.
Morgan is a National Board Certified former teacher and mother of four who stays active as a reading tutor, volunteer and instructor in the outdoor learning center at Forest Park Elementary School.
Tull describes the Vogels and Smiths as “power couples,” but they bring more than clout to their efforts with JDRF. Each has had enough first-hand experience with Type 1 diabetes to make their fight against the disease personal.
Robby’s brother was diagnosed at age 16, and a female cousin was diagnosed at 22 after she learned about glucose while studying in medical school.
“Since my family is intimately connected to Type 1 diabetes, I felt like being on the board was a way I could be involved with finding a cure,” Robby says.
The Smiths, who have led JDRF’s Fund-A-Cure program raising donations to support research, have friends and close relatives, including Isaac’s younger brother, who are battling Type 1 diabetes.
Morgan has vivid memories of her cousin Kenzie, diagnosed at age 6, sitting on the dining room carpet and pricking her finger to perform a blood test after Thanksgiving dinner. In the ultimate nightmare for parents, Kenzie died at 21 from a viral infection and sepsis, her body weakened by diabetes and rheumatoid arthritis.
“This disease makes every little sickness, virus or stomach bug much more serious,” Morgan says. “The complications with a lifelong illness made it harder for her body to fight.”
AMERICANS HAVE TYPE 1 DIABETES
The Smiths also have friends whose daughter, Ada, is a Type 1 diabetic, and they can give firsthand accounts of the carb-counting, blood testing and sugar level checks when Ada sleeps over. They have awakened her at night to give her milk when her blood levels were off and have texted photos of her meals to Ada’s parents to be sure of the carb counts.
“It surprised me how responsible and nervous we felt,” Morgan says. “That unsure feeling when you first bring home a newborn, where you finally get them to sleep but then you want to watch them breathe to be sure they’re okay, or you have to wake them up to feed them at certain hours. That is what it reminded me of.”
“We realized that this was only a short time for us, and Ada would return home soon and our management would be over,” Isaac says. “But her parents, our friends? It would never end for them or Ada.”
Close to 1.25 million Americans have Type 1 diabetes and an estimated 40,000 are diagnosed each year. Around 200,000 Type 1 diabetics are younger than 20.
Type 1 diabetes occurs when the body does not produce enough insulin, the hormone that allows cells to absorb and use glucose to produce energy. Without insulin, glucose can’t enter cells and stays in the bloodstream.
While thought to be most common in children and young adults, Type 1 diabetes can affect people of any age. Genetics, family history and certain viruses can be contributing factors, but the exact cause is unknown, and likewise there is no known cure.
“When someone gets a Type 1 diagnosis, a huge loss is felt,” Morgan says. “It can feel like a tragedy. Your normal way of life for your whole family is gone. Friends want to help. They ask, ‘What can we do? Bring a meal? Help care for the siblings? Run errands?’”
Symptoms of Type 1 include increased hunger and thirst, frequent urination, problems with vision, tiredness or fatigue and unexplained weight loss.
PEOPLE ESTIMATED TO BE DIAGNOSED WITH TYPE 1 EACH YEAR IN THE U.S.
Over time, complications can affect major organs including the heart, blood vessels, nerves, eyes and kidneys with some complications becoming disabling or life-threatening. Treatment is centered on managing blood sugar levels with insulin, diet and lifestyle.
People with Type 1 diabetes must take insulin several times a day, including around mealtimes. It can be administered primarily through injections or a pump.
Despite advancements in technology, it is still up to the individual to check blood sugar and remember to take insulin. Or, in the case of especially young diabetics, it is up to the parents.
“Anyone who knows someone living with Type 1 diabetes is acutely aware of how life-altering the disease is for the patient and their family,” Laura Beth says. “It is always there, never taking a break.”
JDRF was founded in 1970 by a small group of parents dedicated to raising money to fund research. It was a time when Type 1 was commonly called juvenile diabetes because it was frequently diagnosed in and became associated with children.
The organization’s mission is to fund research, advocate for government support of research and new therapies, ensure new therapies reach the market and engage the Type 1 community. The JDRF has funded more than $2 billion in research since its founding.
“Research shows rigorous insulin therapy could significantly reduce the risk of diabetes complications,” Morgan says. “Only one-third of people with Type 1 diabetes, however, are currently achieving the recommended blood-sugar targets. Funds are needed to continue clinical trials where more discoveries will be made.”
Operating with a staff of five, the Arkansas chapter, like the parent organization, relies solely on donations.
“We’re proud of our profit margin, we try to keep our expenses low and we really focus on that,” Tull says. “JDRF is proud of the fact that nationally it gives 80 cents on the dollar back to our mission.”
Efforts include funding startups that are developing new technology, like SFC Fluidics, which is working on a disposable, miniaturized automated insulin delivery device in Fayetteville.
Given their family history, the Vogels have enrolled their children in the TrialNet Natural History Study for the Development of Type 1 Diabetes, a risk screening at Arkansas Children’s Hospital that is part of TrialNet’s worldwide research.
“Without JDRF, studies like these would not be possible,” Laura Beth says.
JDRF is also involved in outreach and advocacy, support programs for children and adults and informative efforts such as guiding people through the ins and outs of their insurance coverage as it pertains to Type 1.
“We can’t do what we do without our volunteer leadership,” Tull says. “We’re a small staff statewide, so the volunteer leadership is really a core strength of our program, whether it’s events or a board.”
“I’ve found that one way to love on these families with a Type 1 diagnosis is to join them in their mission,” Morgan says. “Help raise awareness in our community. Help raise funds for more research. Join in the fun of a gala, where you can feel and see the impact of people joining forces for the people they love with Type 1.”
Fundraisers like the Imagine Gala loom large in JDRF’s efforts. Robby, with Laura Beth, agreed to chair the event in a trade-off for his stepping away from his board duties. The couple’s responsibilities include securing sponsorships, selling tables, procuring auction donations and helping with party planning efforts.
May 11, 6 p.m.
Little Rock Marriott
The evening’s highlight is the JDRF Ambassadors, children with Type 1 diabetes who serve as hosts and hostesses and star in the Fund-A-Cure film that never fails to drive participation in the program.
“We have little girls wake up and say ‘Mama, is it gala day? I want to put my dress on,’” Tull says of the Ambassadors.
Isaac and Morgan, the night’s honorees, have been involved with JDRF for 10 years and are willing participants in the programs they support. They have taken part in the JDRF One Walk event and their daughter, Annette, raised money to donate through a recent crafting project.
The couple counts themselves humbled to be recognized at the Imagine Gala, grateful to partner with the Vogels and — when it comes to JDRF’s vital mission of funding research — as determined as they ever were.
“The true honor,” Isaac says, “goes to all the individuals and families dealing with Type 1 diabetes every day.”