“No child deserves to be sick. No family deserves to have to watch their child suffer and not be able to help. Everything you do does matter.” -Karen Cowan
My name is Karen Cowan and I am the mother of a child, Brandi Nichole, who was diagnosed with Juvenile Diabetes at age 10. In the beginning it was not so bad. Neither she nor I had a clear understanding of what had really happened or the toll that it would take on her life and mine. My daughter was a very vibrant, creative 10 year old. Our lives changed as we began to meet with doctors and dieticians who gave us the list of can dos and cannot dos. She struggled with having to check her blood sugar with a machine and then give herself a shot. My greatest fear was that something would happen to her and I would not be there. I tried to educate the people she was going to be around the best I could, but all I could do was pray that they would respond appropriately when needed.
She changed because people did not want the responsibility of having a child around with diabetes. They were afraid if something happened to her they would not know what to do. Some parents just did not want the responsibility of someone’s sick child in their care. She became sad. She started ignoring the things that she knew she needed to do because she wanted to be like everyone else and she did not want to lose friends because she had this horrible disease that made folks uncomfortable.
There is no way to describe as a parent how this feels. My heart broke for my daughter, for her lost childhood which was now full of blood sugar checks, insulin shots and doctor visits. Brandi got angry and she told me that I don’t understand. She can feel herself losing control and not be able to stop it. She knows when her blood sugar starts to drop and she cannot help it. People would start looking at her like she was an alien. Her speech would slur, she would lose her balance and in many ways her behavior was as if she were intoxicated. I remember one day we were walking in downtown Asheville and everything was fine, then all of the sudden her blood sugar dropped. My daughter was very slender, but as small as she was, she became dead weight. I wondered into a restaurant, dragging her but they shooed us out. They said the restaurant would not be open for another 3 hours. There was one place, no longer open, Café on the Square, who came to my aid. They helped me with Brandi by getting her into their establishment, giving her orange juice, and remaining with me until she became coherent. I wish I could say that more people were willing to help, but my experience was people did not want to be bothered or they were just afraid.
Juvenile Diabetes is an awful disease. It shuts down your body little by little. Brandi fought to feel good and to enjoy life. She suffered many consequences for her actions, but she was determined to live. She was able to do almost all the things she wanted to do. She had many disappointments from friends and family who did not stand by her because they could not bear her disease and the effects of it. She felt lost and abandoned a lot of the times.
She died at 26 years old as her body shut down. She lost her eye sight, she had neuropathy, her kidneys failed, and she went into renal failure. She was in a great deal of pain and suffered. She eventually had a massive stroke that finished her life.
I know her story does not speak for a lot of children who have juvenile diabetes and that some children are able to live a long and happy life. I do want you to know that their lives are not without sacrifice. They have to give up something and they constantly walk around with the knowledge that their physical condition could change at any time. I speak for the children and the parents of the children that you join in this fight to find a cure for juvenile diabetes. No child deserves to be sick. No family deserves to have to watch their child suffer and not be able to help. I understand that no matter what you or I do there will still be sickness in this world. I just want to know that in the end, I did what I could do. I implore of you to do two things. One, be a support system for a family that has illness. They might not ask for your help, but most of them desperately need it. Two, give to the Juvenile Diabetes Research Foundation. Everything you do does matter.