Brady Chappell of Naples will speak to Maine's delegation, including Senator Susan Collins, about the importance of type 1 diabetes research funding during a trip to Washington, D.C. July 24-26.

By Wayne E. Rivet

Staff Writer

NAPLES — There is a lot of big talk going on in Washington, D.C. as politicians try to craft a new national healthcare plan.

Brady Chappell of Naples may be just a little guy, but he and other children battling type I diabetes hope their voices and important messages are heard.

Brady will be attending the JDRF 2017 Children’s Congress July 24-26 in Washington, D.C. The group’s goal is to raise awareness about type 1 diabetes (T1D) and the importance of Congressional support in advancing research that will result in better treatments, prevention and one day, a world without T1D.

“Because of research, there has been significant progress made toward better treatments and a cure (for example, artificial pancreas systems were tested with the support of JDRF and the Special Diabetes Program (SDP),” according to the JDRF website. “We need Congress to continue critical federal funding for T1D research and ensure agencies, such as the U.S. Food and Drug Administration (FDA), are doing their part to advance new treatments like artificial pancreas systems.”

With the annual cost of diabetes soaring near $276 billion per year, the nation cannot afford to falter in its support for better treatments and a cure, which will help to lessen, and ultimately eliminate, the burden of diabetes in this country, according to JDRF.

Brady was selected to be part of the 160 children coalition — ranging in ages 4 to 17 representing all 50 states — to meet with their elected officials in Congress and seek continued federal funding for T1D research.

“This Children’s Congress show of bipartisanship may also be a harbinger of things to come on the healthcare front,” said Brady’s dad, Tait. “The mission of Children’s Congress also illuminates why, as chairwoman of the diabetes caucus in the senate, that (Maine) Senator Susan Collins is coming out against this current healthcare legislation.”

The News conducted a Q&A with Tait Chappell regarding his son’s battle with type 1 diabetes:

BN. When was Brady diagnosed, and how did this come about, any other family history?  

Tait: Brady was diagnosed when he was six on Feb. 11, 2014. He (among others in our family) had been fighting a pretty bad cold for a few days to a week. In fact, we brought him to the doctor to check him out because it was so severe. The doctor assured us he would be fine in a few days and prescribed him some prednisone to reduce some respiratory inflammation. We later found out that prednisone increases blood sugar and puts extra demand on the pancreas (Beta cells) to produce insulin. Most likely, the autoimmune process was underway and Brady had been losing insulin-producing function long prior to this illness, but this is when it was finally taxed enough to cause it to fail altogether and cascade into T1D.

It should be noted, “The exact cause of type 1 diabetes is unknown. In most people with type 1 diabetes, the body’s own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing Beta (islet) cells in the pancreas. Genetics may play a role in this process, and exposure to certain environmental factors, such as viruses, may trigger the disease,” — www.mayoclinic.org/diseases-conditions/type-1-diabetes/basics/causes/con-20019573

After a few more days, he still did not seem to be all the way back to himself. He appeared very thin and tired. We just assumed he would take a few days to rebound, after all, it was quite a severe cold. On one the following days, Brady went to have a sleepover at this grandparents’ house. The next day, his grandmother mentioned to us that he was urinating an awful lot. This was something we had attributed to him just drinking more fluids in his recovery, but this struck some sort of chord with his grandmother though.

Around 20 years earlier, her sister’s son had been diagnosed with type 1 diabetes and she recalled that frequent urination was a sign. Out of an abundance of caution, we made an appointment for Brady to see his doctor. The doctor asked a few questions and then took his blood sugar. Once the doctor saw the results, which simply said “HI,” meaning above the ability of the machine to calculate, she said, “You need to go to Maine Med immediately! Brady has type 1 diabetes, I will let the ER know you are coming!”

It was astonishing such a life-changing diagnosis could be made so quickly and with such certainty. Very fortunate, we caught things relatively early and Brady did not suffer any complications at his diagnosis. A lot of times people do not know they have T1D until they are rushed to the hospital with diabetic ketoacidosis, a potentially life-threatening emergency.

For the next two days, we were in the Barbara Bush Children’s Hospital in a crash course learning what we needed to do to keep Brady alive and healthy.

Besides my wife, Jeanette’s cousin, there was no other family history with Brady’s diagnosis. Since then, the infant daughter of another of my wife’s cousins was diagnosed with T1D.

BN. What has been the most challenging aspect of managing this condition, both for Brady as well as you as parents?

Tait: There is a steep learning curve at the beginning. Learning all the terminology, carb ratios, insulin sensitivity, correction factors… what and how foods impact blood sugar, how to count carbs, how to give injections etc.

There is also the lack of sleep. You need to be up constantly checking blood sugars to make sure the amount of insulin given was not too much. Too much insulin causes low blood sugar (Hypoglycemia), which can be deadly.

There is nothing that T1D prevents Brady from doing in his daily life. His diet, which was already a healthy one, did not have to change. He can eat anything he wants. We just have to account for every carb that he eats and make sure that he gets the correct amount of insulin. It is more of a continuous effort. There are no days off with T1D. Every day, you have to remain vigilant. Doses of insulin are constantly changing and what worked yesterday might not/most likely will not work today. If you get too much insulin, you have low blood sugars (Hypoglycemia) that can cause fatigue, nausea, shakiness, or worse you can have seizures, go into a coma, or die. If you get too little insulin you have high blood sugars (Hyperglycemia) that can cause headache, fatigue, blurred vision and can lead to very severe long-term consequences like blindness, amputation and heart disease. It is a very delicate balancing act with not a lot of margin for error. It is this relentless nature of the disease that is the hardest to cope with.

From the start, we really tried to take everything in stride and not spend too much time mourning, so to speak. This is what was happening… and this is what we had to do… Brady was really very resilient. Within a week, he was giving himself all of his own shots.

BN. How did you and your family become involved with JDRF (formerly known as Juvenile Diabetes Research Foundation), and talk about the importance of involvement?

Tait: I think it was the first full day in the hospital when Brady asked the doctor how many more days he would need to take the shots, still unclear exactly what the diagnosis entailed. When the doctor responded, “For your whole life or until there is a cure.” It was such a crushing reality to hear. I think we all knew in that moment we would do whatever we could to help raise awareness and try to raise money for research to find a cure. JDRF was really best place for that. They play a very vital role in funding breakthrough research for a path to a cure.

Brady currently uses an Omnipod insulin pump and a Dexcom continuous glucose monitor (CGM) as essential tools to help manage his diabetes. Both of these technologies have benefitted directly from research and funding from JDRF.

Being involved with JDRF has allowed us to have some tangible effect on the search for a cure, however small. It has also allowed us to raise awareness in our community. e.g. the JDRF Kids Walk Brady sponsored at Songo Locks two years ago, where Brady was able to speak at a school-wide assembly regarding T1D. In the three years we have done the JDRF Walk, “Brady’s Bunch” has raised nearly $50,000 for JDRF. This September, we will be doing our fourth One Walk and we are excited to start fundraising and see what we can add to that total.

(This is the link to our JDRF Team where donations can be made: http://www2.jdrf.org/goto/Bradysbunch)

BN. How did Brady get selected as a delegate, and what will he be doing at the Children’s Congress? What is he most looking forward to?

Tait: Brady applied to JDRF to become a Children’s Congress delegate and had to write a letter to his member of congress, this together with his record of advocating for T1D was why he was chosen as a delegate.

During the Children’s Congress, Brady will have an opportunity to talk to Maine’s senators and representatives face-to-face about what it is like to have T1D and the importance of continued research and funding toward the ultimate goal of finding a cure. There will also be an opportunity to testify at a congressional hearing as Casco resident Kate Hall did during the 2015 Children’s Congress.

Brady is excited to meet the senators and representatives and see up close how it all works in D.C. He is also excited to meet the delegates from the rest of the country and around the world that will be there.