By Megan Sperling, Eagle Staff Writer
CENTER TWP — More than 150 young people are in the nation’s capital this week to lobby government officials about Type 1 Diabetes.
One of those is Caroline Simms, 13, daughter of Paul and Mary Simms of Center Township.
She is a member of this year’s Children’s Congress, which is in Washington, D.C., today through Wednesday.
JDRF, formerly called the Juvenile Diabetes Research Foundation, takes children who have T1D to talk to members of Congress about the disease that they live with every day.
“The children have the difficult, but important task of telling their story as a way of putting a human face to a disease with challenging complications,” said Lara Daly, development manager of JDRF.
The children represent every state and some will be traveling from Europe.
Daly said, “The goals for Children’s Congress is to ensure that we renew the funding of the Special Diabetes Program, raise awareness, show the delegate that their voice does make a difference and also allow them to meet other kids who want a cure just as badly as they do.”
Caroline has had T1D for two years. In February 2011 she felt ill, and her symptoms made doctors think it was a stomach bug.
But Caroline did not have a stomach bug, and on Feb. 10, 2011, she slipped into a ketoacidosis coma while sleeping.
According to the American Diabetes Association, this coma is caused when “your cells don’t get the glucose they need for energy, your body begins to burn fat for energy, which produces ketones, acids that build up in the blood and appear in the urine when your body doesn’t have enough insulin.”
Her mother, Mary, was away on business, but a family friend was there to help Caroline’s father take care of the children.
The next day was a snow day at school and her family intended to let her sleep in, until a family friend who was helping out realized that Caroline’s breath was shallow.
When Caroline reached the hospital, her blood sugar levels were at 1,697 when normal levels are 80 to 120. According to Caroline’s doctors, she would have lived only 45 more minutes if she had not been treated, her mother said.
She was healthy and never showed any symptoms, which include fruity breath, extreme thirst and frequent urination.
Type 1 Diabetes is an autoimmune disease caused when the pancreas stops producing insulin, a hormone that allows a person’s body to get energy from food. It has not been linked to food or lifestyle, and for now is incurable.
While Caroline was in the hospital, she and her mother were taught how to test sugar levels and inject insulin, and they were told that keeping Caroline alive would be their job.
Caroline’s mother checks her sugar levels at midnight and 3 a.m. every night to prevent her daughter from slipping into another coma.
But instead of shying away from the disease, Caroline has stepped up and taken it head on. She wears a pump on her hip that injects a constant stream on insulin, and she is constantly checking her sugar levels.
She can take it off for up to two hours when she plays sports. A straight A student, she is active with track and soccer.
Caroline can never forget that she is living with the disease, but life does become a little easier when she attends camp. She gets excited and her eyes light up as she says, “Camp is the best thing ever.”
She is talking about her weeklong diabetes camp, where she does not have to constantly remember that she is living with the disease because everyone there has it and the staff remembers for her.
“It’s not like I have to be on top of things because they are so on top of things,” she said. “It’s awesome how they do it.”
Before every meal, people with T1D have to check their sugar levels to know how to regulate their medication with their food.
Caroline has to count every carbohydrate she eats. Food that causes her sugar levels to rise one day can have the opposite effect the next day.
“We count every carb, but if she wants a piece of birthday cake at a party, she is going to have one,” Mary said. “Nothing she ate or did caused this.”
After being diagnosed, Caroline did a science project to learn more about the disease, and has decided that when she attends college someday she would like to be a research scientist.
“I want to be a medical researcher,” Caroline said.
Caroline helped the research clinic at Children’s Hospital in Pittsburgh by allowing it to run clinical testing on her to study T1D. She got paid $25 every time she went down and she donated that money to JDRF.
JDRF researches the disease and helps raise awareness about the children and adults who live with it.
“Raising money for research is key, but awareness is huge,” her mother said.
Caroline works hard to help people understand that this is a serious illness.
“Educating people, that’s what I like most about talking to people,” Caroline said.
Caroline educates people by attending events held by the JDRF and competing in events that raise money and awareness for the disease.
Caroline is excited to join the Children’s Congress. Among well-known people at the event will be actress Mary Tyler Moore, who is the international chairman for JDRF. Moore was not diagnosed with the disease until she was in her 30s.
Crystal Bowersox, who was a contestant on season nine of “American Idol,” will perform with the children.
The children attending the event will speak to government officials from their home states, and some children will be chosen to speak to Congress.