Our Story

Why is finding a cure to Type One Diabetes so important to you and your family?

The first reason…...My daughter, Allison, was diagnosed with Type One diabetes in 1997 when she was about 2 years old.  We were on a camping trip at Carter Caves in Kentucky with my parents. Allison was tired a lot, but as first-time parents we thought it was just normal for her at that age. My parents didn’t think she was acting normal. One night we were having dinner at the lodge and Allison was bobbing her head like she was so tired she couldn’t stay awake.  She fell asleep at the table, and that’s when I remember my parents saying we should take her to the hospital to have her checked. I remember thinking that she was fine, but we still went. When we got to the hospital we held Allison down so they could take blood, and we had to put her in an odd contraption in order to take X-rays. I’m sure it was designed to keep a child still during X-rays, but it looked torturous. When we put Allison in it she screamed. Between holding her down for blood to be drawn and seeing her scream while sitting in this contraption, Jenny and I were sickened and exhausted. When you watch your child go through trauma you experience it with them. When we were in the hospital I remember Allison being clingy. She wanted to be held a lot which is understandable after what she had just been through. Jenny, Allison and I sat around for a while in a room with a curtain around us. We were waiting to hear from a doctor to see if they found anything wrong. Finally, a doctor whipped open the curtain and said, “I know what’s wrong with her. She’s diabetic.” Her blood glucose was in the 500’s. Jenny and I were stunned and nauseated. Jenny asked some questions to understand more about what it meant.  The main thing that went through my head was that Allison would need shots for the rest of her life, and that made me sick. I went to tell my parents and sister that were in the waiting room. I held it together until I told them her diagnosis, and then I wept. I remember all of us hugging and crying. I went back to the room where Jenny and Allison were, and we waited for a doctor to come to explain what was next. The doctor that explained what needed to happen didn’t speak English very well, and he was reading off protocol steps from a piece of paper. We didn’t feel much comfort from this doctor as he wasn’t demonstrating much confidence/experience. Jen asked if we should take her to Children’s Hospital in Cincinnati. The doctor said that we could, but he thought it would be best to slowly bring down her glucose reading first. I asked him if this was his daughter what would he do, and he said to keep her overnight to bring down her glucose and then transport her to Children’s tomorrow. We decided to follow his guidance. That night was a nightmare. We had to hold Allison down while she was screaming to get in an IV so that she could get fluids and insulin. The nurse struggled to get the IV in after trying 2 or 3 times. It was more challenging because Allison was dehydrated. I remember thinking as Allison was looking at me that I’m supposed to protect her, and instead I’m holding her down while she is screaming at the top of her lungs while getting poked with a needle. Jenny went into mother mode and told the nurse to find someone that can get it done. It was not pleasant. I felt bad for the nurse as I know she was trying her best, but I wanted it done. Another nurse came in and got it in on the first try. We were relieved, but that was only for a short period of time. A nurse would come in the room about every hour to prick Allison’s finger in order to get a glucose reading. It may not seem like a big deal to have your finger pricked, but doing it every hour to a 2-year-old is like torture. Allison slept when she could, and her readings slowly went down over night. The next day Allison was transported to Children’s, and Jenny went with her. I drove our car, and met them at the hospital. When I walked in Allison’s room the first thing I saw was a young lady reading a book to Allison, and Allison paying attention. I immediately felt like we were at the right place, and Allison would receive the best care. Allison liked the Winnie the Pooh movie. We played that movie over and over again at the hospital. It seemed to console her and make her happy. To this day whenever I hear anything about Winnie the Pooh I remember Allison sitting in the hospital being comforted. Shortly after Allison was diagnosed I remember lying in bed with Jen and her asking me, “Why would God allow this to happen. Are we being punished?” This had already crossed my mind as it made no sense to put a child through this, but I knew I had to be strong for Allison and her. I said that I don’t understand it, but everything will be OK. 

The second reason…...My son, Zach, was diagnosed with Type One Diabetes in 2017 when he was 11 years old. We found out when he went to his regularly scheduled doctor visit to get a physical. The doctor proactively tested for it, and his glucose was in the 200’s. Not horribly high, but high enough that we knew he probably had it. My wife called me at work to tell me, and I remember saying, “you’ve got to be kidding me” (this is the edited version). With Allison having it for the last 20 years we were well aware of what this meant. When Allison was diagnosed she was too young to understand what was going on. With Zach being 11 it was much different. He has grown up watching what Allison has to do every day. I could only imagine what he was thinking. I left work and met them at the doctor’s office. When I got there Jen and Zach were in the parking lot. I gave Zach a hug, and we both cried. I remember telling him that it will be OK and that I’ll help him with whatever needs to be done. The next day we went to Children’s Hospital where they confirmed the diagnosis. Allison went to the hospital with us. She was always a little mother to Zach, and they were naturally close. She comforted him and let him know that he’s got this. We tried to raise Allison in a way that she doesn’t let her diabetes hold her back from doing everything she wants to do in life. In this moment, she was passing that on to Zach. Luckily Zach was a pretty tough kid. I guess that kind of comes with growing up with two older siblings. Still it was a lot to adjust to for an 11-year-old. At the time he was diagnosed he was into watching The Office episodes over and over. The sarcasm/comedy took his mind off of the diabetes, and that provided him some comfort (just like Winnie the Pooh for Allison). He has always been mature for his age. I think he naturally wished he was closer in age to his sister and brother so he could do what they were doing. I always say that he never wanted to order off of the kid’s menu. He has handled the transition pretty well. I think a lot of that is due to advancements in technology. 

What advancements in technology have taken place over the last 20 years?

When Allison was diagnosed she had a very strict regimen. She had to take 2 shots per day (units of R & N). One in the morning and one in the evening. She had to eat a set number of carbohydrates every few hours (breakfast, snack, lunch, snack, dinner, snack), and sometimes she had to eat even when she wasn’t hungry. That was most challenging where she was only 2 years old. There were times when we had no choice but to give her M&Ms just to get carbs in her to avoid her glucose from going low. To top it off we had to prick her finger to draw blood about 5 times a day to test her glucose. Allison handled it well. She grew up not knowing anything else. 

When she was in elementary school we changed from 2 shots/day to about 6 shots/day. Although this doesn’t sound like an improvement, it was as this allowed her to eat when she wanted. She no longer had to eat every few hours. Instead she would take a shot before she would eat anything with carbs. She also had to take one shot per day which had slow acting insulin that worked over a 24-hour period. She still had to prick her finger about 5 times/day to test her glucose. 

When she was in middle school she started using an insulin pump. To use this we would put a needle in her that was connected to a tube which was connected to the insulin pump. Although having something connected to her all the time didn’t seem like a step in the right direction, it was. This allowed us to put insulin in whenever she ate carbs without having to do a shot. The site where the insulin went in needed to be changed every 3 days, but this avoided about 6 shots/day or about 2,190 shots/year. She still had to prick her finger about 5 times/day to test her glucose. 

When Allison was in college we started using a continuous glucose monitor called a Dexcom. A sensor is attached into the subcutaneous fat just under the skin using an applicator. The applicator pokes a needle in the skin at the push of a button in order to place the sensor. This is usually when I see Allison and Zach wince a little. The sensor is about a half inch in length, and it’s about the width of a couple hairs. Allison no longer had to prick her finger to get glucose readings 5 times/day. Instead she received readings every 5 minutes for a period of 10 days. For Allison in her words, “This was life changing.” For Zach this is the technology he started with shortly after being diagnosed. When Allison played basketball in high school we didn’t know what her reading was during the whole game. For Zach we could see his reading every 5 minutes during the game. This technology has allowed us to improve glucose readings much more which has improved hemoglobin A1C scores. It is a great improvement, but it’s still not a cure.

After Allison completed college technology has made it possible for the continuous glucose monitor to work with the insulin pump some (not completely). An algorithm is used to give insulin if readings are too high and reduce insulin if readings are too low. This helps to reduce lows which is especially important overnight. Overnight lows are the riskiest. We visited the emergency room a couple of times when Allison was young after not being able to wake her up in the morning. Hopefully the algorithm will be enhanced to the point that it will do what the pancreas does, and that would be to instantaneously release insulin based on readings. 

Currently Allison continues to use the insulin pump, but she is looking forward to transitioning to using a tubeless system like Zach does. Zach uses the Omnipod. He has a small machine that is about the size of a small cell phone that allows him to release units of insulin. 

How did the Cure for Diabetes Euchre Tournament get started?

Shortly after Allison was diagnosed we were introduced to the annual JDRF walk which was a fund raiser to go towards research to find a cure for diabetes. Of course I wanted to support this, but after a few years I found myself hating to beg people for donations. I remember thinking that everyone has some sort of illness that impacts their family and friends, and they most likely want to primarily support that cause.

Back in 2003 I saw an advertisement in a church bulletin for the Jack McGarr Memorial Euchre Tournament. It was held at a local high school nearby called Bishop Brossart, and it was a fund raiser for scholarships. I saw this advertised in past years and thought it would be fun, but I never went. This time I felt like I was drawn to it. I decided to go, and I asked my cousin/friend, Leo, to go with me. At this point in my life I rarely went out to do something fun for myself. Allison was 7 and Alex was 4. My life mostly revolved around work and kid events. I only played euchre with family and friends so I only played for fun. I had never played in a tournament. The tournament was a good time. The people that ran it as well as those that played were all nice and friendly. There must have been 200 people playing cards. The food was good, and the whole night was fun. During the tournament, I was thinking about the different ways they were raising money. I asked one of the workers how much money they normally raise, and I believe it was over $10k. I asked if they could share some of their tools that were used to run the tournament as I was considering doing something similar to raise money for JDRF. The McGarr family was very helpful. They even gave me decks of cards. At that point I was only considering it. I knew it would take a lot of time to set it up and run it, and if I were to take this on I was going to do my best to make it a success. I remember talking to my wife about it and her looking at me like I was crazy, but I couldn’t get it out of my head. I remember thinking that this made more sense to me to do than anything else I was doing in my life. I wanted to help my daughter, and supporting a cure felt like the best way to do that.

Why did you initiate the Cure for Diabetes Euchre Tournament fund raiser?

Hope and love!!! Hope that someday Allison would have a future with a better standard of living and possibly not have to deal with diabetes. Now we have this event for Zach too. The reason the euchre tournament became my solution for raising money for JDRF is that I didn’t have to beg people for donations. I could give people a good time while raising a significant amount of money. 

What’s the difference between Type 1 diabetes and Type 2?

There is a big difference to me. 

Type 2 diabetes - This tends to occur to seniors. Occasionally, younger people are diagnosed with it too. This type of diabetes can have a genetic component, and it can be due to long-term unhealthy life style habits. 

Type 1 diabetes – This primarily occurs to children. It is believed to be a result of genetic and environmental factors, but the cause of Type 1 diabetes is unknown. There isn’t anything that shows that people that are diagnosed with Type 1 diabetes did anything wrong. It’s not a result of bad eating habits or lack of exercise. To be completely honest I don’t like that there is confusion between Type 1 and Type 2. Kids that have been diagnosed with Type 1 diabetes shouldn’t be made to feel like that did anything wrong. They don’t deserve that guilt, just like that don’t deserve the challenges that come with diabetes.