By Cheryl Facciani
We traveled to Washington, DC for Thanksgiving to see my parents and other family. On the train ride up from Roanoke, VA, I noticed that Bella literally drank down 24 ounces of water in 10 minutes. She quickly had to use the facilities that were three train cars up. We went and walked back to our seats. Ten minutes later, she was thirsty again. I questioned her and thought that perhaps this was just an excuse for another train walking excursion. We went to the cafe and got another bottle of water. She proceeded to polish off another 24 ounces in the next 15 minutes. This was, of course, followed by another and another request to use the bathroom. I started to become suspicious and began to question what was going on. It was then that I realized her breath smelled stale for someone who just drank 48 ounces of water.
I turned to my husband, who is a physician, after our fifth trip to the bathroom and said, ”Either our daughter has a urinary tract infection or Type 1 Diabetes.”
He looked at me blankly and shook off the idea. I watched and monitored her the whole weekend. Her symptoms waxed and waned.
By Monday, she seemed better and off to school she went. I didn’t give it a second thought until she got off the school bus, tossed her book bag into the mudroom and declared, “That’s it. I peed and drank water all day and my teachers are mad at me. You’ve got to take me to the doctor!” This from the mouth of a sweet, shy, quiet little girl all of 6 years old.
“Absolutely, let’s go to see the doctor,” I said, knowing with a pit in my stomach, and with knees shaking, that my fears had been realized. Something was definitely wrong.
At the pediatrician’s office, Bella urinated into a cup and the pediatrician entered the office with saddened eyes. I knew immediately that my gut was right. She was positive for ketones and was diagnosed with Type 1 Diabetes on December 1, 2013. My world crumbled around me.
Ketones are a byproduct when the pancreas is unable to produce insulin, a key hormone that turns the body’s food source into energy for cell use. Bella was basically starving the cells in her body because her pancreas broke.
Type 1 Diabetes is an autoimmune disorder that attacks the pancreas, rendering it useless. The pancreas is a vital organ that helps regulate the sugars in your body so you can use them for energy. The pancreas is the most incredible organ because it produces both the hormone insulin, which keeps blood sugar levels from going too high, and glucose, which keeps blood sugar levels from going too low. Too much sugar leads to hyperglycemia and too little sugar or too much insulin leads to hypoglycemia. Both are deadly. Without insulin, you die.
It is a delicate balance that the pancreas keeps and having a broken pancreas means that we have to be Bella’s pancreas. Unfortunately, we can’t think like a pancreas and her broken pancreas can’t tell us exactly what is going on in her body. Therefore, there is a lot of guesswork. A pump that pumps insulin into her body only does what we tell it. The pump cannot think. It knows nothing and does not communicate with her body. If we tell her pump to give her too much insulin for her little body, she will go low and could eventually die. If we tell her pump to give too little insulin, her blood sugar will go too high and we will essentially kill her body’s cells and other organs.
After a few days in the hospital, we came home, still shocked and dismayed. We met with the doctors again to review care instructions. Adjustments were constantly being made at this early stage. We met with the staff at Bella’s school to train them and establish safety action plans.
One day shortly after Bella returned to school, I noticed my 9 year old son, Ben, looked noticeably thinner. I started to put some thoughts together. He had recently had a few incidences of bed wetting, which he had never done before. He complained that he was thirsty all the time too. He reported that he was getting up in the middle of the night and going to the bathroom frequently. Suddenly, it hit me– he had Type 1 Diabetes, too.
According to the statistics, the chances having two children with T1D were less than 3%. I had already researched that number. I couldn’t fathom that we were actually that unlucky, that we fell into that 3%. I lived with this knowledge for two days before I mentioned anything to my husband. I knew I couldn’t handle the truth yet. I tried to rationalize my thoughts and fears. I tried to forget the truth but I knew.
I finally mentioned it to my husband. He said, in a matter of fact manner, ”Well, let’s do it. We test him right now.”
I said, “I can’t. I’ll throw up if it is true.”
He tested his blood glucose levels on Bella’s glucometer and he posted 345 — a high number. I cried and later vomited.
All I could think was how did this happen — not once, but twice — in less than a week? You search for answers. You think, what did I do wrong? Where did I go? What didn’t I do? What made this happen?
The truth is we will find a cure before we have answers to these questions. It doesn’t matter what happened anymore. There is no turning back. There is no answer. There is nothing we could have done differently.
- 90% of Type 1 Diabetics have NO prior family history with the disease.
- 15,000 children are diagnosed with T1D a year.
- For the first time ever this year, there were just as many adults diagnosed with T1D as children. (15,000 adults) This is why we can no longer call it ”Juvenile Diabetes.” Too many adults are getting it, too.
- 30,000 people – both children and adults — are being diagnosed with T1D now every year. All over the world rates are rising and no one knows why.
It is not because of better detection. Once you have it, you have it. Without treatment you die. Most people are diagnosed when they are close to death or in a diabetic coma or when they are severely vomiting and having seizures. There is no way to hide that you have it. Therefore, the higher rates are not because of better awareness or detection. This is very scary. Researchers are now starting to link Type 1 Diabetes to three types of viruses, but they don’t really know which ones exactly or how to stop them.
To be frank, at this point, I can’t try to figure out why all this has happened.
Am I mad? Absolutely. Am I angry? Yes. Am I resentful that others don’t have to watch their babies go through this and don’t have the worry and fear that I have on a daily basis? Probably.
Do I know that I must pray, hope, dream and BELIEVE that there will be a cure? Without a doubt. If I don’t have these four things, I have nothing. I will wither in my anger, madness, and resentfulness.
I have made a choice. My choice is to fight this with every ounce of strength I can muster, because no one should have to suffer with this disease. I want to stop Type 1 Diabetes for every child and adult out there now living with T1D, for every person diagnosed today and tomorrow and everyday until we have a cure.
JDRF is the only organization that will get us there. Frankly, the government doesn’t do much. Every breakthrough that has occurred has occurred because of JDRF‘s initiatives and self funded research projects. The JDRF is paving our path to the future with a world without T1D.
They will turn Type One into Type None. It is only a matter of dollars and time.
A Cause Close to Our Hearts
Bradley & Son Funeral Homes and the Center for Life Transition have sponsored Bella & Ben’s Believers as their team raises money for the JDRF Walk to Cure Diabetes on 9/28/14 in Roanoke, VA. This is a nationwide event to help raise the much needed funding for continued research on this autoimmune disease and its future cure. We hope that their family’s story has inspired you to contribute anything you can to this important cause. Please visit their team page directly to make a donation and to learn more about how you can get involved.