From the outside looking in, the Tabatabai family has it all.
Hibab Tabatabai serves as an administrator at the University of Central Oklahoma, and his wife, Tara, is a practicing attorney. Their two sons, Ideen and Shervin, both seem destined for success. Ideen, 27, is beginning medical school this fall at the University of Oklahoma Health Sciences Center, and 15-year-old Shervin hopes to attend Johns Hopkins University in Maryland and become an engineer.
But behind the closed doors of their comfortable Oklahoma City home, the Tabatabais share a real struggle. The three males of the family suffer with Type 1 diabetes, a disease in which the body's own immune system attacks the cells in the pancreas that produce insulin, a hormone that helps convert the sugar in foods into nutrients that flow into other cells in the body to produce energy.
When the body isn't properly producing insulin, sugar builds up in the blood, and that can result in organ damage or failure, coma or even death. Pricking their fingers anywhere from six to eight times a day to monitor their blood sugar levels and taking insulin shots each time they consume food, even a simple snack, is the only way to treat the disease.
“Life with T1D is a constant battle against something that never takes a minute off. It's a life of meticulous calculations of when you last ate, the last time you took insulin, the type of food you're going to eat, the type of activity you're about to do, when you're sleeping next, how much insulin you have left, the amount of stress in your life, and a whole slew of other variables. It's so much more than shots and finger pricks,” said Ideen, who was diagnosed at age 12.
“And so often the mental toll can be equal to the physical toll on your body. Having to manage a daily life-threatening disease all while trying to keep up with the other responsibilities of normal life can really test your sanity, and too many times you see people buckle under the emotional pressures just as much as the physical ones.”
For the Tabatabais, managing the disorder is a balancing act, but they are determined to keep fighting, and together, as a family, they are pouring their hearts and energy into educating others about the disease and advocating for a cure.
The family took a trip last month to Washington, D.C., where Shervin, along with 150 other children from across the country, had been selected by the Juvenile Diabetes Research Foundation to participate in the 2013 Children's Congress aimed at extending federal funding for the Special Diabetes Program, an appropriation for research on the prevention and cure of Type 1 diabetes in the amount of $2.04 billion. The event drew celebrity advocates including actresses Mary Tyler Moore and Jean Smart and NBA All-Star player Ray Allen. U.S. Vice President Joe Biden also supported the Children's Congress.
“The Children's Congress is really good because it's not very often that you get to meet other people who are dealing with what you're dealing with. It's like you instantly have a connection with them,” said Shervin, who was diagnosed two years ago and represented Oklahoma at this year's event. “It was also interesting to meet with senators, share your story and to try to get their support.”
This was the Tabatabais' second time at the Children's Congress as Ideen was selected to participate in 2001, years before the family could even imagine that Shervin would also receive a diagnosis.
For Hibab and Tara, who don't possess a family history of Type 1 diabetes, knowing that both of their sons have the disease is overwhelming at times.
“It's emotional. There is always those times that I question whether I was the cause of this for them,” said Hibab, 60, who received his diagnosis at 35. “This is tough, it's costly, and it's nonstop. It is manageable, but by no means is it normal. The children that I saw at the congress come from excellent families, but many don't have the resources for proper care. My desire for a cure is deeply personal, but it is also for others, too. There is no reason to delay finding a cure and to burden the next generation with this if we can take care of it now.”
Did you know?
• According to the Juvenile Diabetes Research Foundation, scientists are uncertain of the causes of Type 1 diabetes, but believe autoimmune,
• As many as 3 million Americans have Type 1 diabetes. In the U.S., a new case of diabetes is diagnosed every 30 seconds, and more than 1.9 million people are diagnosed each year.