Lilli is 9 years old and gets her facts from the television, she says. But statistics don’t tell the story of families struggling to cope with the disease once it hits. “There are many organizations whose mission it is to fund and find the cure,” says Cindy Poggione, executive director of Central Coast Type One Diabetes Foundation. “That is not our mission.”
Her mission played out Sunday, Aug. 5, as she arranged for many area families to not only attend the Santa Barbara Fiesta Rodeo but also get the chance to meet Luke Branquinho, three-time world champion in rodeo events, who also is a Type-1 diabetic.
Branquinho, who hails from Los Alamos, won world titles in 2004, ’08 and ’11. Pulling his insulin pump from his pocket, he talks candidly about his own experience – not hesitating to answer questions from what medication combination he is on to how he balances his high energy life with his high-maintenance condition.
“So do you stay on a strict diet?” asks a dad. A mom wants to know what Branquinho does when he’s performing. The woman’s teenaged son loves sports, but the combination of sweat and activity dislodges the pump. Another parent wants to know if Branquinho has a sweet-tooth.
In sum, yes he’s careful about his diet, including his nagging sweet-tooth. With his doctor’s blessing, he takes off his pump just while he’s in the ring. “I don’t let it control me. I control it,” he says of his condition. Type-1 Diabetes – an autoimmune disease – prevents the pancreas from producing insulin, which is vital to generating energy from food. While its cause is not yet fully determined, both genetic and environmental sources play a role. There are no known steps to prevent its onset and no known cure.
Because Type-1 is as hard on the lifestyle as it is on the body, says Poggione. “We are part of a national movement to build local support systems so every Type-1 will have access to immediate support upon diagnosis and well as consistent monthly support.” On this day, the interaction between kids and parents asking questions and sharing experience underscores just how important the events and classes Poggione sets up are.
Type-1 can affect children or adults at any age. Branquinho wasn’t diagnosed until college, Lilli’s came at age 3. Its onset is sudden and brings with it lifelong dependence along with the constant threat of complications – some of which are devastating, some just annoying. Lilli isn’t hesitant to speak of the aggravation.
“I don’t like it,” she says. As far as she knows, Lilli is the only student at her school dealing with Type-1. It hangs like a cloud over both her fun moments as well as the everyday ones.
Too often school parties, or after school birthday parties, are filled with things Lilli can’t or shouldn’t eat. Jason – Lilli’s dad and also a Type-1 – wishes schools would adjust policies, creating guidelines that benefit all kids. It isn’t as if the country hasn’t seen a near epidemic increases in diabetes generally, he says.
Without enthusiasm, Lilli notes that some of her friends do provide “other” treats – just for her. A step in the right direction, perhaps, but Lilli’s lack of enthusiasm shouts her reality that the kind thought still comes with a red flag waving the message that she is different. She doesn’t want to be different.
Lilli shrugs and changes the subject to the school nurse, another thorn in her side. Lilli doesn’t like being sent home when her sugar level runs high. It is a policy her dad doesn’t understand and Lilli perceives as unfair.
“She can still do her studies while she waits for her numbers to come down,” says Jason. After an insulin adjustment, it can take hours for blood levels to change. There really isn’t any danger in her staying at school, Jason complains. He has had Lilli’s doctors try to convey that to the school to no avail.
“People with diabetes understand how it works better that people who don’t,” he says.
These kids understand. Six-year old Ellie and 7-year-old Zachary test themselves several times a day. They talk of the pain, the annoyance, the lack of understanding by others. Ellie, like Lilli has a pump, but Zachary injects himself with his insulin dialing in the needed amount on a special pen.
“He’s a very positive person,” says Zachary’s dad. Lilli’s dad notes how responsible his little girl is. But Sunday’s event was all about having fun, as well as community. Finishing their lunches and collecting Branquinho autographed T-shirts, they head past the horses and cows to their seats in the stadium, smiling with anticipation.
According to the Juvenile Diabetes Research Foundation International, as many as 3 million American’s suffer from the disease, with up to 80 more a day receiving the diagnosis.
For each and every one of those locally, Poggione plans to provide the support they need. For more information and assist in the cause, visit centralcoasttypeone.org. struax@syvjournal.com