Emmabella celebrated her fifth birthday and then started kindergarten a few days later. It was an exciting time in her life, and she loved every minute of it! She was always our little social butterfly. Little did we know how quickly things would change.
One day in early October our nightmare began. Our once vibrant, bubbly, silly little girl, just wasn't herself. It was like she went to bed a normal healthy kid and woke up the next day sleepy, moody, and sickly. She began consuming bottle after bottle of water, using the restroom every 45 minutes, and was ravenously hungry.
I decided to take her to her Pediatrician, a place I knew well, with three young children. I am a bit overprotective when it comes to my kids, but I was thinking it is better to be safe than sorry. It always turned out to be ok. Honestly, I thought it would be ok this time too. So I was shocked when our Doctor said she wanted to test her for Juvenile Diabetes. I had no idea these were the symptoms of a chronic devastating disease. I thought Juvenile Diabetes was hereditary, and we had no family history of the disease. Our Pediatrician explained that 90% of those diagnosed have no one in their family with the disease.
So, forty five minutes later, my cell phone rang. It was our Pediatrician. She told me it was Juvenile Diabetes, and we needed to pack our things and get to Riley Children's Hospital as soon as possible. At that moment life was not good, it was absolutely terrifying, our worst nightmare was now a reality, one of our children was struck with an incurable disease, and with out proper care, she could die.
On our way down to Indianapolis, the Pediatric Endocrinologist called us several times, he was trying to keep us calm, but stressed the importance of us arriving quickly and keeping her hydrated so she wouldn't slip into a coma. She drank eight bottles of water on the 3 hour trip (her thirst was unquenchable). Nothing could prepare us for what was to come, the never ending poking and pricking of needles into our tiny little angel. Since the first blood draw on October 10 of 2006, our little girl has not gone more than four hours with out having a needle poke her in the finger, a syringe stab her in the arm, leg, bottom, or tummy. No one deserves this. Life as she knew it was gone.
She no longer lead the carefree life of a child. Instead she had to be a mature little lady who pays attention to how she is feeling at all times. She had to be sure to let us know if she is feeling low, to prevent her from having seizures. We would check her blood sugar at least 10 times a day, and three times while she slept. She sleeps through the finger pricks now, but in the beginning we couldn't even let the poor child sleep in peace. She can even drink a juice box in her sleep, when we need to bring her up in the middle of the night. She could no longer eat with out asking me first, not even one bite. So forget about mindless snacking, like most children do. She can not eat with out testing her blood sugar and then getting a dose of insulin. Sometimes her blood sugar is too high, and we can not let her eat at all, even if she is starving. When she is in school, she visits the nurses office at least three times a day. Each time, the nurse calls me with her blood glucose level and I decide whether she needs a juice box, or a corrective insulin dose. She could no longer be dropped off at birthday parties or play dates, she will never be able to have a sleep over at a friend's house. No car pooling to soccer games or practices. She had less freedom than her younger siblings. You may be wondering why she was unable to do all of these normal childhood activities. If she is with someone who does not know what to do if she gets low, she could have a seizure. If she eats something, and does not get insulin, she could get very sick and go into a coma. If she is too low or too high to help herself, she could die. Each time I leave Emmabella with someone, I am trusting them with her life, and it is a fragile one. Diabetes is attacking every organ in her body, and insulin is simply life support.
Type 1 Diabetes strikes children, teenagers, and adults suddenly, leaving them insulin dependent for life. It is believed an environmental trigger causes the body to attack the beta cells in the pancreas leaving it no longer able to produce insulin. To stay alive these people living with type 1 diabetes must have insulin injected into their bloodstream each time they want to eat. It is always a struggle to maintain her blood sugar at a normal level. Emmabella calculates her insulin doses based on her current blood sugar, as well as the amount of carbohydrates she consumes. Unfortunately it is not that simple. Many other factors effect her blood glucose levels, such as physical activity, stress, and illness. The complications of low blood sugar are a daily threat to her life, so we have to vigilantly prick her tiny little fingers to be sure she is not in danger. If her blood sugar gets too low she could have a seizure or go in to a coma. If it stays too high it causes organ damage resulting in kidney failure, heart disease, blindness and amputation. Diabetes is the sixth leading cause of death in this country.
We as a family have grown so much in the past thirteen years. We have learned how to care for Emmabella in an entirely different way to try to ensure she will have a long healthy life, and now as an eighteen year old, she takes care of herself. After spending the first year receiving insulin shots at least six times a day, we decided to put Emmabella on an insulin pump. Thanks to all of the money donated to research, scientists have developed cutting edge pumps to deliver insulin into the body on a more consistent level which is similar to how the pancreas works. This alone has improved our lives significantly, as well as added years to hers. She is also on a Dexcom continuous glucose monitor (CGM), which is attached to her body, on a second location, and gives us her current blood glucose readings every minute, and sounds an alarm if she is approaching a high or low. So finally, she can give her fingertips a rest, and we all can actually get a few hours of sleep. When she sleeps, it is the most terrifying time of the day for us.
Emmabella is full of spirit, smiles, laughs, and appreciates the fullness in life. She is always a trooper and a rarely complains, amidst her daily diabetes routine. When she was first diagnosed, it broke my heart every time I would hear her ask; when is my diabetes going to go away? It was always a painful question to answer looking into her beaming and hopeful eyes. I always told her with confidence; when the doctors find a cure.
The day Emmabella was diagnosed we made the conscience decision not to accept that this is going to be a life long disease for her. We decided that we would do everything in our power to make a difference and help find a cure for type 1 diabetes. This is why we created Emmabella's Believers, dedicated to raising awareness of type 1 diabetes and funds for the Juvenile Diabetes Research Foundation. Emmabella's Believers has raised $300,000 in the last thirteen years.
As parents we must do everything in our power to help find a cure for our daughter and everyone else who is suffering from this devastating disease. Every year we take part in the "Walk to Cure Diabetes" sponsored by the Juvenile Diabetes Research Foundation, the #1 non-profit organization, aimed at finding a cure for diabetes. The Walk is JDRF's largest fundraising event. This program has raised hundreds of millions of dollars for diabetes research.
We are asking for your help in raising money to find a cure. Our hope lies with you and your donations to support the researchers. We believe we will find a cure thanks to people like you, who confirm a caring and sharing community.