In April 2009, at the age of two, our daughter Ellery was diagnosed with Type 1 diabetes, otherwise known as 'juvenile' or 'insulin dependent' diabetes.
Type 1 diabetes is an autoimmune disease, occurring when the immune system of a genetically susceptible individual overreacts to some viral or environmental trigger, killing the cells that produce insulin. The body needs insulin to convert food into energy for vital organs.
There are no known methods for preventing type 1 diabetes. Diet and exercise cannot prevent it nor can they alone manage it. Type 1 diabetics are dependent on insulin to survive.
Ellery has an insulin pump and a continuous glucose monitor connected to her body at all times. Unfortunately, these technologies cannot sense what the body needs at each moment so we, her parents, must do that for her. We must check her glucose levels throughout the day and night, monitoring and adjusting her insulin to accommodate the type and amount of food she consumes, her level of activity, her metabolism, illness, growth spurts, hormones, emotional states and many other factors that are difficult to predict and estimate.
Over half of children with diabetes develop complications within 15 years. Complications include blindness and organ failure. Untreated, type 1 diabetes results in death. Miscalculations in treatment (too much or too little insulin) also results in death. It's a delicate balance where the variables are constantly changing. Every few weeks we hear of another child who died from diabetes. These children had educated and attentive parents. They had access to the same amazing technologies that support Ellery. They go to bed fine and never wake up, likely due to undetected low glucose sometime during the night.
Very high or low glucose is immediately dangerous. Moderately high glucose over time causes irreversible organ damage.
Former FDA Diabetes Care Chief, Dr. Alexander Fleming states the problem clearly: "...the treatment of the absolute insulin deficiency resulting from [type 1 diabetes] is very challenging. Insulin administration remains relatively hazardous and not fully effective in preventing complications, even if managed meticulously." (March 2007)
Insulin, pumps and glucose monitoring are miraculous advances but they are not a cure. Even with these, life with type 1 diabetes is scary and exhausting.
You can make a difference for Ellery and others like her. No donation is too small. Together we can make a difference.