Dear Member of Congress,
My name is Hank McCue. I am 10 years old and have had Type 1 diabetes for 4 years. When the doctors told me I had diabetes that was the most unforgettable moment of my life. It was very difficult to adjust to life with daily shots, finger pokes and carb counting. I check my blood sugar 6 times a day and then take insulin to help my body process the food I eat. If I take too much insulin and then have low blood sugar I get shaky and fuzzy. I am lucky though because I recognize when I am running low. A lot of diabetics cannot recognize low blood sugar until they get very sick. It is a very fine balancing act with carb counting and insulin dosing before every snack and meal. On the bright side, I have gotten much better at math because it is like doing a math problem every time before I eat!
My Mom and Dad don?t hover over me quite as much as they did when I was first diagnosed because I am learning to manage my own care. But, my playdates with friends are usually shorter and recently I had to leave a birthday party because in the rush to get there we forgot my insulin and testing kit. It has to go with me everywhere and it?s not just like forgetting to bring my backpack to school. I can get very sick if I don?t have it with me. It?s quite a responsibility!
Type 1 diabetes has made me a different kid, not better or worse just different. I have had many opportunities to speak about diabetes (although at first I preferred to ignore it). I have met many awesome people through these opportunities, I have learned a lot of personal responsibility and have empathy for people with all different types of issues, health or otherwise.
A cure for Type 1 diabetes is important to me. It will mean living a life without pokes and shots and carb counting. I will no longer be treating the symptoms of the disease but actually living free of the disease. I try very hard to manage my disease but that still doesn?t mean that I won?t have health consequences. I worry about my eyes and feet and other long term issues if I don?t constantly manage my blood sugars. I get scared sometimes when I read some things on diabetes that could happen to me!
A cure would also mean that my Mom and Dad won?t worry about me all the time. My Mom or Dad get up every night to check my blood sugar to make sure I?m in my correct range. Every once in a while I can see how sad it makes them even though they try and cover it up. A cure would also mean I would be living a more carefree kid life.
The SDP is important to me because it is funding several research projects that can help make my diabetes more manageable, find out the cause of it and possibly one day let me live insulin free. The research project Diabetes Research in Children is 67% SDP supported. They are testing new diabetes management technologies in children. I would really like to have a less painful way to manage my disease. I get tired of all of the shots and pokes. I also tried the insulin pump but found that very painful to insert the infusion set and very difficult to keep in. I am VERY active 10 year old year old boy and it kept falling out and then I would have to keep going through the painful process of having it reinserted. The second research project that is of interest to me is the Type 1 Diabetes Genetics Consortium/Function of T1 Genes and Environmental Determinants in Youth Study. This is 100% SDP supported. There is no history on either side of my family for T1 diabetes. I would like to know why my body decided to shut down my pancreas and hopefully help other families help prevent this from happening. The third and most important group to me is the Clinical Islet Transplantation Consortium. This is 98% funded by the SDP. This group is working on insulin producing cell transplant therapy. It is for finding a cure! That would be my dream.
There are at least three reasons why I think the U.S. Congress should support diabetes research issues to help find a cure for T1 diabetes. First, it is a growing problem as more and more kids are being diagnosed and in my case with no family history. Secondly because this is a growing problem, it is going to be a very expensive problem not only for the individual families paying for their diabetic supplies and their insurance companies but this will also affect the taxpayers who pay for health care for those that need help with their medical care. The diabetic supplies are very expensive. One blood sugar test strip costs approximately $1. I have to test my blood sugar 6-8 times a day. The other expense is the long term health repercussions. No matter how well a diabetic manages their care, perfection of blood sugar management is next to impossible and there will be some sort of wear and tear on the body after years of T1 diabetes. The third reason of the U.S. Congress support is as simple as improving the quality of life for millions of people, especially kids.
I have been very active in promoting awareness of T1 diabetes in my community. I have raised over $20,000 over the last 4 years with the JDRF walk at the Mall of America. My team name is Hank?s Team and each year approximately 70 families donate money to my team. We have about 20 team members that walk with us. It is a lot of fun and makes me proud.
I also promoted a fundraiser at my school for Camp Needlepoint. This is an overnight camp for kids with diabetes. I was able to go for a week and be with other diabetic kids and do all of the things kids do at camp. I had a lot of fun. My school raised $1500 to go directly to the camp. It was a week long fundraiser. My family kicked off the week with a presentation to the whole school and I got up and spoke to tell the kids about diabetes and my experience with the disease.
I was also invited to speak on behalf of Camp Needlepoint at the American Diabetes Association annual gala. I was on stage with Jeff Passolt and told the audience about the camp and explained how important and fun the camp was for a kid with diabetes. My portion of the program we were able to raise $70,000 for the camp.
After I was diagnosed, my family became involved with the Golf Fore the Cure, a fundraiser that has raised millions of dollars to support diabetes research at the Schulze Diabetes Institute at the University of Minnesota.
Also, as a result of my diagnosis, my grandfather is on the Diabetes Advisory Committee for the Minnesota Medical Foundation, which is developing fundraising opportunities for diabetes research.
I appreciate your taking the time to read my letter. I have had a lot of opportunities to promote T1 diabetes awareness in my community. I would love to have the opportunity to speak to and meet with the U.S. Congress to promote awareness.
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