Utah Junior diabetes delegates speak to Congress

SALT LAKE CITY — The Utah Junior Diabetes Research Foundation (JDRF) held a Bon Voyage June 12, to send two delegates to the Children’s Congress 2009 Senate Hearings on Type 1 Juvenile Diabetes in Washington D. C. to be held in mid July. The hearings were to urge legislators to remember them.

Utah Jazz Basketball player Deron Williams hosted the JDRF event. He also donated $50,000 from the Deron Williams Celebrity Gala and Golf Weekend held at Thanksgiving Point July 10-11.

Type 1 diabetes is the most serious and complicated form of disease that accounts for some $132 billion in annual health care costs in the U.S. alone. A person’s pancreas stops producing insulin, the hormone that enables people to get energy from food. To survive, people with type 1 diabetes must test their blood sugar up to five or more times a day by pricking their fingers for blood, and then self-administering insulin through multiple, daily injections, or the use of a continuous infusion insulin pump.

Every two years, JDRF International Chairwoman Mary Tyler Moore and over 150 children with type 1 diabetes gather in Washington, D. C., to meet face-to-face with some of the top decision-makers in the U.S. government. Children, ages 4 to 17, represent all 50 states and the District of Columbia. As participants in JDRF’s Children’s Congress, they have a unique and empowering opportunity to help members of Congress understand what life with type 1 diabetes is like and why research to find the cure for diabetes and its complications is so critical.

The JDRF Children’s Congress program was inspired by a boy from Massachusetts named Tommy Solo when he was 8 years old. He heard some adult JDRF volunteers talking about going to Washington, D.C., to talk to Congress and thought it would be great if kids could go, too. No one knows better what it’s like to live with type 1 diabetes than kids who have it. Since then, five successful Children’s Congresses have occurred.

This years JDRF representatives from Utah were Jimmy Healy and Grace McCullough.

Healy, 10, from Smithfield, was diagnosed at age 4. He uses an insulin pump that he wears on his stomach. He and his family participate in JDRF Walks, and he has been interviewed on television about his disease. A member of the swim team Barracudas, he has won numerous awards in swimming and qualified for the last two Junior Olympic State Meets.

"I hope my story will help to find a cure for diabetes so I don’t have to worry about everything I eat all the time," said Healy.

Diagnosed a year and a half ago, McCullough, from Kaysville, enjoys skiing, arts and crafts, swimming, playing the piano, reading, playing on the computer, going to school, and playing dress up. She hopes to be able to be on the Super G ski team and become a veterinarian or a school teacher. She is involved with JDRF, speaking to corporations at Walk kick off events and other fund raisers. As a delegate, she hoped to raise awareness about type 1 diabetes and be part of finding a cure.

During this 10th year of the Children’s Congress, Moore asked Congress to continue to help find a cure both through legislation like the Special Type 1 Diabetes Program, as well as through raising awareness about the need to speed progress on the development of an artificial pancreas.

Chris Haning, 20, was diagnosed with type 1 diabetes when he was 7 years old. Chris is a member of Saint Olaf Parish, Bountiful, a graduate of Woods Cross High School, and is now attending Southern Utah University in Cedar City on a full-ride football scholarship.

Chris’ symptoms included drinking a lot of water and having to go to the bathroom frequently both day and night. His mother Patti decided to have him checked. A urine test showed he was diabetic, but his count was so high they did not have a meter in the office that could accurately read it. The pediatrician told Patti to take him to McDonald’s for a burger, fries, and a shake, and then take him to Primary Children’s Hospital to be tested.

"After shock and tears, it was a pretty interesting day," said Patti.

John, Chris’ father, too, had an interesting day. At the time he was the head football coach at Woods Cross High School. It was the Monday after the worse loss of his career, and he could not imagine anything could be worse until Patti told him about Chris.

"That was a reality check," said John. "There are things more important than losing a football game."

Chris was admitted to Primary Children’s Hospital, and his blood sugar count was over 700. The doctor told them in two or three more days he could have been in a diabetic coma. While they were trying to get Chris’ blood sugar down he was feeling sick with a headache, vomiting, and was tired of shots and having his finger pricked every hour to test his blood sugar. After about three days he began to feel better. Diabetes runs in John’s family. His sister has type 1 diabetes.

"They did a fabulous job educating us," said Patti. "Dr. Rob Lindsay is Chris’ doctor, and still continues to follow Chris’ progress. Every three months he gets an A1C test, and that is how we see how he is doing overall.

"For the first eight years, we would go to clinic, in which Dr. Lindsay would see Chris. He would also see a nurse, a dietician, and a social worker," said Patti. "Every three months we had that support in place. They gave us feedback according to how he was doing, and what we needed to do when we returned home.

"We he was first diagnosed, I took three weeks off of work to test him at recess and at lunch to see how he would do while he was at school," said Patti. "After that he learned how to test himself and he was fine. He had to test himself about five or six times a day, and still does. We had to make sure all the teachers knew what he needed. We had supplies in the office and supplies in his backpack, and he always had fruit snacks in his pocket."

"The doctor said when we were learning how to treat Chris, ‘If you teach him and he learns to control his blood sugars, he will have a normal, healthy life just like any other kids.’ And that was our goal," said John.

"But Chris has had three really serious grand mal seizures, which have required us to call the paramedics," said Patti. "And they are very very scary. They just wipe him out because his blood sugars go too low. Luckily the seizures all happened at home. He has not had one for five years, and we credit that to him using the pump. Chris seemed to have a harder time feeling when his blood sugar was low.

"But we never stopped Chris from doing anything," said Patti. "He snow boards, has been on junior high and high school basketball and footballs teams, and is now playing college football. He takes his backpack with all his supplies everywhere he goes. With football, he is consuming about 10,000 calories a day, and has to balance his carbohydrates with his insulin and his exercise. His first year of college was scary for me, but he has done well."