What our voice has to say....

Type 1 diabetes and Daniel

Daniel is a sweet 10 year old boy who was diagnosed with Type 1 when he was six years old. Here is the truth about Type 1 in Daniel's world. When diagnosed he was in the first grade. At the time he looked like a skeleton with dark circles under his eyes, he could not stay awake and he could not quench his thirst. The moment the doctor told us our son had diabetes, it changed our lives forever. We came so close to losing our precious boy and the fear that we felt that day has stayed with us always.

The people who have come and gone in Daniel's life have been a mixed bag. The amazing diabetes team he had in the beginning became like family. They cared for our whole family during the intense training that had to be done. To this day, even though we are now across the country from them, we still keep in touch. His teachers and daycare at the time of diagnosis were not so wonderful. The teacher stayed annoyed that his care interrupted her routines. She expected him to be totally self sufficient with his diabetes and did not want to have to help him. The daycare that he attended after school refused to give shots of any kind, including Glucagon, which would save his life in an emergency. Because they would not administer insulin, Daniel could not have snack time like the other kids. Try explaining that to a six year old boy.

There have been many people who have been afraid of being responsible for his care. Teachers who have refused to treat him like a regular kid because he might break. His grandpa is still afraid of being alone with him, he is afraid something bad would happen and he would not know what to do. There have been bullies at school who did not understand and were afraid Daniel was contagious or would simply die.

There have been people who have been angels in Daniel's life. His sisters both stepped up from day one and learned how to help with carb counting, giving shots, how to check blood sugar and so many other details that come with this disease. He has had teachers who have wanted to learn how to help him and have. There is usually at least one kid in each class who has been his D-partner at school. If he had to go to the office for a blood sugar test, this kid went with him. If he was eating a snack, this kid helped him count carbs and remember to cover it with insulin. If he was acting different, this kid is the one who would immediately get him to test his blood sugar.

Daniel started his journey with Type 1 taking two shots a day. He then went to at least four shots a day. Now he is on a pump, which he is attached to 24/7. He has always poked his finger to test his blood sugar around 6-8 times a day, now it is more like 10-12 times a day. His finger tips are always covered with tiny red dots from all the pokes and his tummy and hips are covered with little, white, permanent scars from the places his pump has been reattached every three days. This progression was not due to his diabetes getting worse, this progression is due to the advancement in treatments. Gee, doesn't really sound like it is closer to a cure, does it?

This child, like so many others just like him, has to count the carbs in every morsel of food that enters his mouth so he can dose himself with insulin to make sure his blood sugar does not skyrocket. He must always carry juice or some form of sugar with him in case his blood sugar goes too low. He must also always have his blood sugar meter with him so he can check to see if he needs more insulin or more sugar. It is an impossible balance. One that he will struggle with until there is a cure.

Type 1 diabetes does not sleep when Daniel sleeps. We must check his blood sugar during the night as well. There are many things that can happen during the night. His blood sugar could crash low and he could die. He could go high during the night and slip into DKA or a coma. He could also fall victim to the "Dead in Bed" syndrome. No, these things don't just happen if his diabetes is not being taken care of. There are over 100 things that affect blood sugar levels and we only have control over three. We have control over food, insulin and exercise. We do not have control over things like stress, hormones, illness, or emotions. So you see, it is virtually impossible for someone with Type 1 diabetes to always have steady blood sugars.

We teach our son to be open and honest with everyone about the fact that he has diabetes. This will help him stay safer because if he has an insulin reaction or some other emergency, people around him will be aware and know what to do. Later in life, this could become a problem. Many adults try to hide the fact that they have a chronic illness because, while it should not, it can cause problems with employment or relationships.

Every low blood sugar depletes the bodies natural defenses to correct itself. So if there are multiple lows in a row, each one becomes more dangerous than the last. Each and every high blood sugar does damage to the vascular system. Type 1 diabetes causes damage throughout the body and can lead to nerve damage, kidney damage, blindness, amputations, stroke, heart attack and more. When my little boy is 26 years old, he will have been living with Type 1 for 20 years. Here is the thing, no matter how well he takes care of himself for those 20 years, diabetes can still win.

People diagnosed with Type 1 diabetes only make up about 5-10% of all diabetes cases, but that is still a large number of people. Type 1 diabetes is an autoimmune disease, so these people have a greater risk for other autoimmune diseases. We keep hearing how Type 1 diabetes is easily controlled, I think there are about 2-3 million families that would disagree with that statement. No person should have to live with the threats this illness holds over them. No child should have to be responsible for their own lives day in and day out. No parent should have to live with the ever present fear of what this disease is doing to their child's body. No person should have to worry about the cost of insulin and diabetes supplies, without insulin and the way to get it into his body, my son would die.

What we need is for people to be better educated about Type 1 diabetes. We need the CURE.