As a mother of a Type 1 Diabetic, I heartily support the initiatives and purpose of the CJ’s Fate & CJ’s Angels Foundation! Let me tell you why:
My daughter was diagnosed with Juvenile Diabetes (Type 1 Diabetes) at the age of nine. This took our family completely by surprise. We had no other diabetics in the family and had no idea what the disease was even about. She started showing the usual signs of diabetes (that we weren’t familiar with at the time): weight loss, excessive urination, drinking lots of water, fruity breath, etc. We took her to the doctor and they immediately figured it was juvenile diabetes. They sent us to Phoenix Children’s Hospital where we stayed for three nights. There were intense training sessions throughout our stay. She was started on insulin shots with daily meal plan restrictions. We were overwhelmed, and we had no idea how we were going to get through this.
After a year or so, we began to use insulin pen for delivering her daily insulin. This helped a lot since we didn’t have to carry around separate needles and insulin, but just a single insulin pen that had the insulin inside the pen. It’s still very overwhelming and impacting to our daily lives – trying to keep our child’s blood sugar checked and under control; keeping up with the diet and understanding how many carbs are in her food; and all the while, trying to let her lead a somewhat normal life with school, friends and sports.
My daughter did a pretty good job of not letting this bother her too much. She adapted and went on with her daily routine as much as possible. It was harder for us, as parents, to deal with the extra responsibilities and worries. It’s not as easy to just let her stay the night at a friend’s house without talking to the parents about the situation, and making sure she has all the materials she needs to manage her diabetes and not have a severe low blood sugar attack.
We then moved on to the insulin pump. The training on this device was the most overwhelming yet. However, it made life much easier after we got through the initial training sessions. She could now pretty much eat whatever she wanted. We just needed to figure out how many carbs she was eating and plug that into her pump! Our lives were free again! She never worried about what people thought of her being diabetic or why she was wearing this device attached to her skin. Many people would ask her what the pump was for, and she would matter-of-factly tell them, “I am diabetic and this is my pancreas.”
Once you get the diabetes under control, it still forever changes your lives. School orientation now involves meeting with the school nurse to ensure they understand how to manage her blood sugar checks and emergency situations. Traveling is more complicated — packing necessary supplies and getting through airport security. Sleepovers are more complicated — making sure she is checking her blood sugar and worrying that if something happens, the parents will know how to deal with it. Dealing with insurance companies is more complicated — getting the required insurance approvals and bills paid to the doctors as needed. We have had several incidents where her blood sugar fell below 20 and we had to use the Glucagon to bring it back up. You’re never prepared for that and it’s always scary, no matter how many times it has happened in the past.
But diabetes doesn’t just bring change and worry into your life. You also take on many added costs, including the cost of the insulin, supplies, and specialty doctor fees, etc. We, unlike many, were very lucky that we had excellent insurance that covered most costs. That was one less thing for us to have to worry about. Without insurance, it is extremely expensive to cover the doctor visits, insulin and supplies needed to manage diabetes. Insulin costs about $1000 for a three-month supply (our co-pay cost is only $50); pump supplies are over $1000 for a three-month supply (our co-pay cost is about $140); test strips are over $1000 for a three month supply (this is covered 100% for us and we pay nothing for test strips or needles). Her quarterly Endocrinologist doctor visit runs about $380 a visit (our co-pay is around $38). As you can see, without insurance, it would cost over $1000 a month to manage this disease.
Our daughter is now 18 years old. Managing the disease is part of our lives and daily routine now. But the worry of her blood sugar going low never goes away. Now that she’s considered an adult, she doesn’t like to listen to us harp on her about checking her blood sugar, and I believe she does not check it as often as she should be checking it. She stays at friends’ houses much more often now and as a parent we have much less control of how she’s managing her blood sugar. I know it will get better as she continues to mature and understand the impacts of not properly managing it, but it will take time to get there.
Now the additional worry is helping her find a career that she will have adequate insurance coverage with. She will never have the flexibility to just get any job. She will have to make sure she has a job that has good enough insurance coverage to cover the costs associated with managing her diabetes. Our family owns a salon and she has always been interested in being a cosmetologist or co-owner, but that’s not even an option right now since she would have to provide her own insurance coverage, and that would be too expensive for the pay she would receive (if she was even able obtain that kind of insurance coverage). She will not be able to follow her heart for a career, but will have to decide on a career that will provide excellent insurance coverage for her. At least she is a full time student right now, and we will not have to worry about this until she is 26 years old. There are many others that are not in this good of a situation.
I’m so happy to see the efforts of CJ’s Fate to help the many Juvenile Diabetics and their families who need help in paying for the necessary medical assistance they may not be able to pay for themselves. It is an extremely important initiative and I hope everyone can help spread the word!