GUILDERLAND — Faced with a difficult diagnosis, the Siggia siblings have not only coped well but have prevailed.

Nickolas Siggia has been living with Type 1 diabetes for nine years, since he was 3. His sister, Samantha, has been a Type 1 diabetic for three years; she’s almost 16.

“It is very shocking when your child is diagnosed with something like that. We’re saddened that they can’t be normal kids,” said their mother, Rose Siggia.

In June, Rose and her husband, Jeff Siggia, will make a trip to Washington, D.C., with Nickolas and Samantha, where the kids will serve as delegates and appear in front of Congress to discuss how important funding and research are to finding a cure for juvenile, or Type 1, diabetes.

The siblings applied to be delegates through the Juvenile Diabetes Research Foundation’s “Children’s Congress” program. They’ve actively participated with the JDRF organization since Nickolas was diagnosed at age 3.

Type 1 diabetes is an autoimmune disorder in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. The body’s immune system attacks and destroys the insulin-producing cells of the pancreas; the causes are not entirely understood, but scientists believe that both genetic factors and environmental triggers are involved, said Katie Marschilok, a nurse and certified diabetes educator.

“Before 1921, when insulin was discovered, people usually died within a year or two of diagnosis,” Marschilok said. In the 20 years that she has been involved with diabetes research, Marschilok said, there have been new and better insulins and insulin delivery systems developed. 

JDRF’s mission is to find a cure for diabetes and its complications and to develop new and better treatments to keep people with Type 1 diabetes healthy. In a recent study, it was discovered that one out of every 523 school-age children has diabetes, and the majority of them have Type 1, said Marschilok.

Type 1 diabetes is not preventable, whereas Type 2 diabetes may be, since it tends to manifest in people who are obese and inactive, said Marschilok. Type 2 diabetes is more easily controlled and even eliminated through lifestyle changes and medication. The number of Americans with Type 2 diabetes has increased dramatically in recent years.
“Type 1 diabetics have no cure. They literally need insulin to survive,” Marschilok said.

“Super Siggias”

The Siggias have formed teams for local diabetes walks every year since Nickolas was diagnosed. They used to call themselves “Neighbors for Nickolas,” but, after Samantha was diagnosed, they became “Super Siggias.” Mrs. Siggia said the teams have raised over $20,000 over the years.

“It is really cool to have all of our friends and people who support us come together, and to see the millions of people who are at the walk, helping raise money every year,” said Samantha, a Guilderland High School student.

The JDRF sends delegates to Washington, D.C., every other year, but the age limit for a delegate is 17. Samantha decided to apply to be a delegate this year, because it would be her last chance, since she is 16.  Nickolas joined her in the effort.

The application process involved writing an essay about what a cure for diabetes would mean to the individual, and an explanation of leadership skills and volunteer experience. Each of the kids also made a video, and a scrapbook about their lives with diabetes.

Samantha said that, to her, a cure for diabetes would mean living a normal teenage life; not having to think about the disease constantly; no more needles; no more feeling sick and dizzy; and a better chance for a healthy life as she gets older.

For Nickolas, it would mean not having to give himself shots, not having to check his blood sugar before every lacrosse game or before playing with his friends, and not having to carry a bag full of supplies everywhere.

“A cure would make my life easier,” said Nickolas, a Farnsworth Middle School student.

Neither of the Siggia siblings is on an insulin pump, so they inject themselves with insulin four times each day. Nickolas said he has to rotate the areas that he gives himself the shots, because they can’t be given in the same spot all the time.

“I’m saddened because it’s a lifelong disease — they have to be very careful about monitoring insulin, watching what they eat, and counting carbohydrates” said Mrs. Siggia. She said they had to make sure to educate the kids’ friends and teachers, in case something were to happen while they were out of the house.

“If their blood sugar gets too low, they can get confused, and they need juice right away, or else they could faint,” Mrs. Siggia said. The long-term effects of diabetes can include heart problems, loss of eyesight, and infections leading to the loss of limbs.

“I always have to be aware of it. I have to think about what I put in my mouth, how vigorously I exercise, and what amount of insulin I need,” said Samantha.

She plays soccer and swims, among other sports, and said she gets frustrated when her blood sugar gets low in the middle of a game and she has to sit on the sidelines to drink juice and wait for her sugar to stabilize. Or, if her blood sugar gets too high, she feels sick and gets “crabby.”

“If my blood sugar is too low, then I can’t play, but if it’s too high before a game starts, I don’t play well,” said Nickolas, who is on his school’s lacrosse team.

Samantha said she gets scared when she hears stories about people who have gone blind or had to have amputations due to the complications of diabetes.

Going to D. C.

“I was so surprised, overwhelmed, and excited when I found out I was chosen as a delegate,” said Samantha. Only 120 delegates were chosen out of 1,500 applicants. When she gets to talk to her representatives —  senators Charles Schumer and Kirsten Gillibrand, and Congressman Paul Tonko — she plans to tell them to remember how many lives juvenile diabetes effects, and how many lives would be improved or even saved if they could find a cure.

Nickolas can’t wait to speak in front of Congress either.

“I’m going to tell them that the cure would help my everyday life, and it would help all the other kids out there with diabetes,” he said.

“I’m really excited about meeting and talking to all the other kids about how they handle diabetes; it will be nice to be around other people who understand,” said Samantha.