In 2015, I learned of some tragic news that affected a family that had been close friends for years. Little Oliver, the one year old son of our friends, Bethany and Joshua, was diagnosed with T1D (Type 1 Diabetes). The long term prognosis for Oliver was not good – Diabetes is debilitating – and there is no cure. I recently asked Bethany to put, in her own words, what it has been like to discover and have to live with the fact that your child has diabetes.
“On March 29, 2015, when Oliver was just 21 months old, he was diagnosed with type 1 diabetes. From the moment of diagnosis, we, Oliver's parents, had to begin monitoring his blood sugar all the time. If his BG number goes too low, he could have a seizure and die, if it goes too high it will cause long term damage to his body, and could also cause him to go into diabetic ketoacidosis and go into a coma and die.
At first, we tested Oliver at least every 2 hours, 24 hours a day. Then after a few months, we got a Dexcom, which is a continuous glucose monitor. We are able to see his numbers on our phones and his number updates every 5 minutes. It will beep loudly if he goes too high or too low. We are able to test him less because of the Dexcom and we are able to sleep a little more.
When Oliver eats any food, we have to count every single carb and give him insulin for it. For the first couple of months after diagnosis, we had to give Oliver shots with all of his meals, but then we were able to get him a pump which we can tell to give him insulin every time he has carbs.
We have to change his pump site (like a big shot that leaves a tube under his skin) every 3 days, and change his Dexcom sensor every 10 days. These both hurt him, but it is definitely better than all the shots and finger pokes that he had to get at the beginning.
Oliver will turn 6 in June. He is one of the bravest people I've ever known. This disease is so much harder than anyone besides the people living with it know. It is completely unpredictable and never follows the rules. It has affected our whole family. Our "normal" is full of constant awareness and worry, prevention and reaction. We never get a break from it. It is exhausting. It is very frightening. I read a fact that most type 1 diabetics have complications (such as blindness or kidney failure) within 20 years of diagnosis. Reading this was like a punch in the stomach because Oliver will only be 21 when he hits 20 years with diabetes. That is, unless we find a cure before then.”
T1D is even more devastating than what Bethany has let on. She didn't mention the countless trips to the hospital when Oliver's Blood Glucose numbers were going whacky! Nor that despite making great progress, the life expectancy of people with type 1 diabetes is still approximately 12 years less on average than the rest of the general population.
Common complications from T1D include:
Cataracts and/or retinopathy in your eyes. (Very likely!)
Kidney disease (also called diabetic nephropathy) leads to dialysis and/or kidney transplant.
Nerve damage caused by diabetes known as diabetic neuropathy.
Type 1 diabetes can also affect the large blood vessels, causing plaque to build up leading to a heart attack.
I wondered, “What had this toddler done to deserve this fate?” The answer, of course, is that Little Oliver will suffer this insidious disease through no fault of his own.
The increased mortality and the burden of long-term diabetes care indicate that there is still much we need to learn about type 1 diabetes prevention, treatment, and finding a true cure for this disease. The ADA estimates that 40,000 people receive a type 1 diagnosis each year in the United States. Please help me raise funds to support the research we need to help Oliver - and the 200,000 other kids - as well as the 1 million who are now adults and suffer with T1D.