VINTON–When Nicholas Toney was two years old, he contracted a virus that stubbornly refused to go away. A few weeks later he was diagnosed with Type 1 Diabetes and overnight life became complicated for Nicholas and his family.
Nicholas first became ill in December of 2010. His doctor prescribed antibiotics which didn’t help; x-rays ruled out pneumonia. He had three days of breathing treatments. He wasn’t eating and lost six pounds. His parents noticed increased thirst and urination.
In early February 2011, he became nauseous at day care. Doctors initially suspected a stomach virus which was making the rounds. Since Nicholas wasn’t any better the next day, a doctor’s appointment was scheduled. One of the tests the physician performed was a blood glucose test, which was so high that they couldn’t obtain a reading. They immediately sent the family to the pediatric emergency room at Roanoke Memorial Hospital where he was diagnosed.
At that point, Nicholas was suffering from diabetic ketoacidosis, a potentially life-threatening complication, resulting from a shortage of insulin. He spent the night in the Pediatric Intensive Care Unit receiving insulin and fluids, and a total of five days in the hospital while doctors worked at getting his blood sugar levels regulated. While he was a patient, his mother spent time taking classes on managing his future care.
Type 1 Diabetes (T1D), is an autoimmune disease in which the body has trouble regulating its blood glucose levels. The pancreas stops producing insulin, a hormone that enables people to get energy from food, although onset has nothing to do with lifestyle or diet. The body’s own immune system attacks and destroys the insulin-producing cells in the pancreas.
Type 1 Diabetes has been called “at best a nuisance and at worst a constant threat of death for millions of Americans.”
This disease is not isolated or rare; it is affecting more and more people. Something is causing a T1D epidemic. Scientists aren’t sure what it is, but suspect that the disease is most likely triggered by a virus. Evidence suggests that both a genetic predisposition and environmental factors are involved.
“When Nicholas was diagnosed in February 2011, he was one of six children from the Roanoke area who were admitted and diagnosed with Type 1 Diabetes (T1D) at the same time,” said his mother, Martha Toney. He is one of at least four children in the Vinton area with Type 1 Diabetes.
Carilion did not have a pediatric endocrinologist until 2009 when Nicholas’s physician, Dr. Begum-Hasan, came to Carilion. Due to the increase in patients, Carilion has now hired a second specialist. Their office treats approximately 200 pediatric diabetic patients.
“The peak time for new diagnoses is fall through spring,” said Toney. “When I asked why, I was told because that time frame is the peak time for viruses, which are believed to play a part or be an environmental trigger for the auto-immune response for the attack on the pancreas.”
Currently there is nothing a person can do to prevent T1D and nothing they can do to get rid of it. It’s chronic—children don’t outgrow it.
“Nicholas has to endure checking his blood sugar 6-8 times each day, as well as 6-8 insulin shots every day,” said Toney. “He is a real trooper. Insulin is what keeps kids with Type 1 Diabetes alive, but it is not a cure.”
A cure is what people in the Roanoke Valley will be walking to fund on September 23 at the JDRF Greater Blue Ridge Chapter’s Walk to Cure Diabetes.
JDRF, formerly known as the Juvenile Diabetes Research Foundation, is the leader in research for type 1 diabetes in the world. It sets the global agenda for diabetes research, and is the largest charitable funder and advocate of diabetes science.
Founded in 1970 by parents of children with Type 1 Diabetes, JDRF has awarded more than $1.6 billion to T1D research, over $116 million just in 2011.
Eighty percent of JDRF expenditures go directly to research and research-related education, taking scientific developments and translate them into cures, treatments, drugs, and therapies. Their goal is to accelerate progress on the most promising opportunities.
Technology has improved the lives of some diabetics, with insulin pumps replacing manual injections and glucose monitors that keep constant watch of diabetics’ blood-sugar levels. Nicholas himself will soon start using the insulin pump. Yet diabetics are still required to frequently monitor and adjust their insulin levels.
“When we go anywhere, we must carry a cooler for insulin, food, emergency snacks, water, and a testing equipment bag,” said Toney. “We have to always stay on a schedule with eating and checking glucose to try to keep the blood sugar levels constant. Diabetes dictates your life.”
“Both children and adults like me with T1D need to be mathematicians, physicians, personal trainers, and dieticians all rolled into one,” said actress Mary Tyler Moore, International Chairman of the JDRF. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”
For children, especially those as young as Nicholas, the brunt of the responsibility for these tasks falls to the parents.
“I can’t say enough about how important it is for me for him to be able to be a little kid and let me bear the weight of what he has to deal with,” said Toney. “I don’t want him to have to worry and suffer any more than he already does.”
Nicholas attends one of the Honey Tree Early Learning Center preschools, where the staff is MAT (Medication Administration Training) certified to administer the insulin. They check his glucose level and then call Toney who tells them the amount of insulin to administer.
“Honey Tree goes above and beyond,” said Toney. “They keep a close watch on him.”
The FDA recently approved the first U.S. outpatient clinical trials for an artificial pancreas funded by JDRF and created by a UVA School of Medicine research team, which automatically monitors blood sugar levels and provides insulin as needed, relieving patients from having to regularly check their blood sugar levels and administer insulin shots. The new hand-held device could soon change the entire process of regulating a patient’s glucose, by making it all completely automatic.
The JDRF Greater Blue Ridge Chapter Walk to Cure Diabetes on September 23 is their 20th annual walk. Registration begins at 12:30 p.m. at the Virginia Museum of Transportation and the walk starts at 2:00 p.m. There is a new route this year for the one mile family route and the three mile route, which incorporates part of the Lick Run Greenway. Advance Auto Parts is the signature sponsor for the event.
The walk concludes with a picnic lunch in the rail yard of the Virginia Museum of Transportation provided by Kroger, along with Deb’s Frozen Lemonade, coffee from Froth, cupcakes from Viva La Cupcake, and frozen yogurt from Menchie’s. Local band Barefoot West, recently featured in the movie “Lake Effects”, will be playing before and after walk.
This is the Toney’s second year to do the walk. Last year the Nicholas Choo Choo Express team, captained by Martha Toney raised $3600, with the support of family, friends, and coworkers.
Those who would like to participate or to contribute to the JDRF Greater Blue Ridge Walk to Cure Diabetes may register or donate online at www.walk.jdrf.org . Those who would like to contribute to Nicholas’s team specifically can follow the tabs to his team.