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Eric Wildstein Gazette staff TheGazetteEric

Hes only 5 years old, but hes preparing to advocate for juvenile diabetes research before Congress.

Miles Bone spent Wednesday morning engaged in a wild, water war with his pre-kindergarten classmates at Gaston Day School to celebrate the end of the year. After toweling off, he readied to eat a chicken nuggets lunch from Chick-fil-A with everyone.

But first, he had to prick his finger with a needle to test his blood glucose level, a ritual he must repeat several times each day as a Type 1 diabetic. He entered his glucose number into an insulin pumpwhich he wears basically 24/7that injects him with the correct amount of insulin through a tube attached to his arm to keep his blood glucose stable after eating.

We talked about last night how he wants to show people what its like to have Type 1 diabetes because a lot of people dont know, said Sara Bone, Miless mother. A lot of people dont understand what Type 1 diabetes is and how much it affects his life and how hard he has to work to take care of himself.

Type 1 diabetes, also known as juvenile diabetes, is an autoimmune disease in which a persons pancreas stops producing insulin, a hormone people need to get energy from food. Children and adults can be diagnosed suddenly at any age. It cannot be prevented and there is no cure.

Miles, who lives in Dallas with his parents and older brother, will advocate for Type 1 diabetes research on Capitol Hill in late July. He applied and was selected to be part of a delegation of about 160 children from each U.S. state and several countries representing the Juvenile Diabetes Research Foundation 2017 Childrens Congress, a bi-annual event.

The delegates will be lobbying their representatives of Congress to remind them of the vital need to continue supporting Type 1 diabetes research that could reduce the burden of the disease and ultimately find a cure.

CC 2015 Highlights from JDRF on Vimeo.

These childrenages 4 to 17will participate in a number of activities on the Hill, including a Congressional Committee hearing to share personal testimonies that highlight the daily struggles of living with Type 1 diabetes and the need for continued funding for research projects such as the Special Diabetes Program, which provides $150 million annually for Type 1 diabetes research at the National Institutes of Health.

I want Miles to one day be able to eat some pizza and not feel bad three hours later for doing it, said Sara Bone. I think that were almost there and I want him to actually know a day where he doesnt have to worry about it.

Miles was diagnosed with Type 1 diabetes just three days after his first birthday. His parents noticed he was feeling ill and scheduled a visit with his pediatrician. Miles was hospitalized with diabetic ketoacidosis, a potentially-deadly result of extremely high blood glucose and remained there for three days before his release. It was a scary time for his parents and brother, who had no family history of Type 1 diabetes and were new to caring for the condition.

It was the scariest thing that first day we brought him home, said Sara Bone. You just think how am I ever going to do this.

They would learn to balance the high and low blood glucose fluctuations that result from diabetes and how to maintain them with a proper diet. That includes keeping a close eye on what Miles eats, delivering insulin at the proper times and boosting low blood glucose with juice boxes, glucose tablets or another form of carbohydrate.

At school, Miless teachers help him to keep track of his health, though hes already handling a lot of the heavy lifting on his own. Sara Bone says its a constant balancing act and it causes Miles to miss out on or delay certain activities so that he can care for his diabetes. But she feels its already made him a stronger person.

Its made him more compassionate, she said. Its made his brother a compassionate kid. He really cares about Miles and wants to see him OK and cares about his future.

And Miles will work toward that brighter future by joining a long list of other advocates with Type 1 diabetes, such as celebrities including the NHL Hall of Fame hockey player Bobby Clarke, musicians Bret Michaels and Nick Jonas, and the late actress Mary Tyler Moore.

NASCAR Xfinity series driver Ryan Reed, 23, was diagnosed with Type 1 diabetes in 2011. He later began his nonprofit organization, Ryan's Mission, which advocates and raises money for Type 1 diabetes research.

Reed will host the Lilly Diabetes #DriveYourHealth Track Walk from 2 to 4 p.m. Friday at the Charlotte Motor Speedway. Lilly Diabetes will make a donation to the American Diabetes Association Charlotte Chapter for each participant who reaches the finish line.

Reed will also sport the Lilly Diabetes logo on his No. 16 Ford Mustang at the NASCAR Xfinity series events at the speedway this weekend.

Miles and his family have already been doing their part. The family has participated in five Juvenile Diabetes Research Foundation One Walks and mentored several families who are new to Type 1 diabetes.

As for what Miles hopes his talks with Congress will yield for type 1 diabetes, he says optimistically a cure.

You can reach Eric Wildstein at 704-869-1828 or Twitter.com/TheGazetteEric.

Read more here:
Gaston 5-year-old lobbying Congress for Type 1 diabetes cure - Gaston Gazette

This entry was posted on May 25, 2017 at 11:52 pm and is filed under Diabetes. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |