KATY (Covering Fort Bend News) – Grayson Schnellhardt, a 13-year-old who will be an eighth-grader at Cinco Ranch Junior High this fall, was diagnosed with Type 1 diabetes when he was just 1 year old. Lulu Aklestad, a 15-year-old who will be a sophomore at Seven Lakes High School in the fall, was diagnosed when she was just 4 years old.
This month, they will both head to Washington, D.C., July 8-10 as ambassadors to represent Texas at the 2019 Children’s Congress. Held biannually, Children’s Congress is the largest media and grassroots event supporting Type 1 diabetes research.
The goal of the event is to raise awareness about T1D and to let congressional leaders know how essential they are in advancing research and helping JDRF achieve its vision of a world without T1D. JDRF is a nonprofit 501(c)(3) organization that funds Type 1 diabetes research and advocates for regulation favorable to medical research that makes it easier to market new medical devices. It was formerly called the Juvenile Diabetes Research Foundation.
Type 1 diabetes is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin producing cells in the pancreas, called beta cells. While its causes are not entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D and, at present, nothing you can do to get rid of it.
Grayson loves tennis, basketball, “Star Wars,” playing video games with his friends and participating in taekwondo where he has earned a second-degree black belt. He says taking care of his diabetes is a never-ending process.
“Every day we have to take care of the diabetes,” he said. “If we don’t, we have to take more and more of our day to take care of it and those can pile up. Then I can miss a whole lot of stuff that I wouldn’t have missed if I didn’t have diabetes.”
Grayson’s mother Christy Schnellhardt says the “unsung heroes” of her son’s experience living with T1D are the school nurses in Katy ISD.
Grayson also says many people have misperceptions about Type 1 diabetes.
“One thing I would tell people who don’t know much about it is that it isn’t just eating candy,” he said. “Sure, it’s fun eating candy, but it isn’t fun eating candy at 2 a.m. That happens when I am low. Diabetes never stops; it is always on. There is no off switch. It stays on in school, during vacations and during sports.”
Grayson would like to speak to Congress about getting more funding for JDRF’s Special Diabetes Program and talk about ways to lower the cost of insulin.
“There are people who are skipping meals because they don’t have enough insulin,” he said.
Grayson is hopeful that researchers are close to finding a cure.
“What I want to say to them (Congress) is to keep doing what they are doing because it is really good so far,” he said. “We are so close to a cure; don’t stop now.”
When Hurricane Harvey hit, Lulu’s family had to evacuate their home. Their first priority was making sure they had Lulu’s insulin as they jumped a fence and waded through water to get out of their neighborhood.
“The first thing we packed was my insulin, because if I don’t have my insulin, I can’t live,” she said. “If we didn’t have anything else, we needed my insulin supplies.
LuLu is a member of her school’s varsity dance team, National Charity League, rock climbing club and American Sign Language Honor Society.
“I don’t remember life before (diabetes), so I am used to it,” she said.
LuLu hopes to encourage Congress to continue research into a cure and to better the technology available to manage the disease. She also wants to encourage lawmakers to figure out a way to lower the cost of insulin and hopes the ambassadors can persuade members of Congress to continue approving money for research by renewing the Special Diabetes Program.
“It is really high, and people can’t afford it,” she said.
Grayson and Lulu were both chosen from a pool of applicants and say they are excited to be a part of the experience and are hopeful they can make a difference.
“I am really excited and it’s going to be really cool,” said Lulu.