This interview is a bit different from the usual writers, singers, webcomics folks and actors I’ve been interviewing. It’s a bit more personal as well, so I thought I’d give it a chance to really stand out by posting it on the weekend, when perhaps more people will have a chance to really read it.
Today’s guests are my cousin Frank LaPinta and his nine-year-old son, Frank John. Both Frank and FJ live with Type One diabetes, more commonly known as Juvenile Diabetes. Yes, for my teenage readers, the same form of diabetes that Nick Jonas has. I wanted to give Frank and FJ a chance to tell their story. Here it is.
ANTHONY: Hi, guys! Thanks for agreeing to be interviewed! Let’s start out by talking a little bit about the Walk that you’re doing in support of the Juvenile Diabetes Research Foundation. When is the event this year, and where?
FRANK: The 2011 JDRF Walk to Cure Diabetes takes place in many locations throughout NY and the entire country. There are 3 walks on Long Island – 2 in Suffolk and 1 in Nassau County, which is where we walk. It’s on the campus of SUNY Old Westbury College. The entrance to the college is on Route 107 in Old Westbury, about 1 ½ miles north of the Long Island Expressway. Heading north on 107, it is on the left side.
ANTHONY: What’s the most common misconception people who don’t have diabetes seem to have about people who do have diabetes?
FRANK: It is unfortunate in a way, that misconceptions concerning the causes and effects of diabetes are becoming far and few between, because of the fact that it is becoming so much more common. One of the more common misconceptions is how one gets the disease, which even the best of scientists and doctors who are involved in some of the longest running research studies, still haven’t put a finger on.
Many think that it comes from someone eating too much of sweets and foods containing a lot of sugar. While that is clearly not good for you, and while it can indeed contribute to Type 2 Diabetes, with Type 1 or Juvenile Diabetes there has been strong evidence coming out of some of the research which suggests that a virus attacks the immune system causing ones own cells to attack the insulin producing islet cells of the pancreas until, over a short time, those cells are unable to produce any insulin. Findings like this have in recent years been cause to categorize Diabetes as an auto-immune disease.
Another common misconception is that someone with diabetes should not eat any sugary foods or carbohydrates or they will become very ill. Many years ago it was considered taboo, but today diabetes medicine has come so far that we now know that we can enjoy a lot of the same foods by carefully balancing our meals with insulin. And in fact, a reasonable amount of carbohydrates is absolutely necessary in everyone’s diet.
ANTHONY: Frank, as an adult dealing with the disease, tell me a little bit about your history: when were you initially diagnosed with juvenile diabetes? How quickly did you accept that this was something that would possibly be with you forever?
FRANK: I was first diagnosed with the disease about 2 weeks before my 17th birthday, on the day that was actually my brother’s birthday, almost 30 years ago. I had been to the doctor a few weeks earlier with symptoms of frequent urination and getting up a few times in the middle of the night. My family doctor treated me with medication for a kidney infection. About 2 weeks later, when that was giving me no relief, still having frequent urination, very thirsty and after losing a total of about 30 pounds, he did a quick urine analysis and sent me with my parents to the hospital where I spent 5 days being treated and learning how to give myself insulin injections and how to eat a whole new way.
As a teenager, this was obviously a very scary and upsetting thing. I learned very quickly from the doctors and nurses that this was not something that would go away, so I knew pretty much right away that this would be with me for the rest of my life. I knew of the disease and a couple of people that had it but didn’t know until then entirely what it meant to live with it. I had to accept it but I was not happy.
ANTHONY: How did it feel when your son was also diagnosed?
FRANK: Of course my wife Alison and I were devastated and again I was angry – an anger and fear that dwarfed the way I felt at 17. Until 4 1/2 years ago, I didn’t know the full effect it had on my parents. Anyone with a sick child can attest to that feeling of helplessness, even though we do all that we can to keep them safe and healthy.
The worry that I could pass on a gene to my kids had always plagued me to the point that at times I did not want to have children, even though I had been assured that the disease was not necessarily proven to be hereditary. It had always been on my mind to watch the kids for symptoms and whether or not it was all in my head, Frank John seemed to exhibit them sometimes. And during his regular doctor visits the pediatricians assured us that he was fine and indeed he was. He was a pretty typical and curious 4 year old and often watched me check my own blood sugar, asked a lot of questions and already knew a lot about how to take care of diabetes. I at times wanted to check him but when I asked him if I could, likely just afraid of the finger stick he said, “No, daddy. Maybe when I’m big like you.”
He was about 5 weeks short of his 5th birthday in January, 2007 when his preschool teacher requested that we send in some bottled water because he was drinking a lot. And on a day shortly after, I was home from work for about 20 minutes and noticed he had gone to the bathroom 3 times. He then finally agreed to let me check his blood sugar on my meter. He did not cry. In fact he was pleasantly surprised that it did not hurt. For me, the feeling was horrible waiting to see that number. 527 mg/dl. I will never forget it. I pounded the table in anger then composed myself for his benefit as Alison called the pediatrician who told us to take him to Schneider’s Children’s Hospital immediately.
How did I feel … after it all settled in? Sad! Very, very sad and very scared. I suppose we asked ourselves what any parent would ask, “Did I do something to cause this? Would this have happened if I did something differently?” While we still wish we had answers to those kinds of questions, we learned from his healthcare team that there are no answers other than “No.” Nobody really knows why, even with all the scientific studies going on for many years now. Thanks in no small part to support groups at Winthrop University Hospital, his endocrinology healthcare team at Schneider’s, and to JDRF and our involvement in the Walk to Cure Diabetes, we learned quickly that we are not alone. We are lucky that we caught it in time because we knew what to look for, and compared to a lot of families, lucky that we already have experienced this disease and we had some idea how to take care of him. For that, I am oddly happy that I was diagnosed when I was 17.
ANTHONY: Frank John, what’s the worst part of having diabetes?
FRANK JOHN: The worst part for me was in the beginning when I had to take shots – 3 to 5 times every day. And sometimes it was in a bad spot and it hurt very badly. Also when we were in restaurants, my dad had to take me into the bathroom to do the shots. That was annoying. Even now sometimes when the pump isn’t working, or when I need a new infusion set, I need to get a shot.
ANTHONY: What are your favorite sports to play? Does your diabetes ever get in the way of playing?
FRANK JOHN: I like to play soccer. I’m on a team that practices every Saturday in the Fall and the Spring. We practice for a tournament each season and for a game against the parents. We beat them every time! And NO! My diabetes doesn’t really get in the way. My dad checks me (my blood sugar) before the game and during our break. Sometimes I need a sugar tablet or juice box or a snack before I go play.
ANTHONY: What’s your favorite subject in school?
FRANK JOHN: My favorite subject in school …. hhmmmmm … Gym!
ANTHONY: What are your favorite movies?
FRANK JOHN: Hmmmmmm … Rango, Diary of a Wimpy Kid, Diary of a Wimpy Kid – Rodrick Rules, Toy Story I, II & III, and Cars. Can’t wait for Cars II to come out on DVD.
ANTHONY: For both of you, what is your favorite book and what would you say to recommend it to someone who hasn’t read it yet?
FJ: I like SpongeBob books and the Diary of a Wimpy Kid books. Rodrick Rules, The Last Straw, Doggie Days & The Ugly Truth. Me and my sister and my dad laugh when we read them. We are reading them a second time now. I would recommend the Wimpy Kid series because it has funny parts and the drawings that Greg puts in his diary are very funny.
FRANK: And Daddy has never really been fond of reading. I don’t remember which it was but I think the last novel I read was about 25 years ago or more in college. And now with a house and kids in school and one that requires more attention than the other, that’s pretty much out of the question. But I do wish I had the time to get involved in reading, if not for the enjoyment, then to set an example. I’m a firm believer that reading regularly makes a kid smarter and keeps you sharp, something that my wife might agree I’m not doing too well with in my middle years. But this interview isn’t about HER, now is it?
ANTHONY: Frank, I’m sure at the next family gathering Allie will yell at me for not interviewing her and Alexa too! Speaking of family: FJ, tell us a little about the person you dedicated your Walk to last year and this year.
FJ: We dedicated the Walk to my dad’s dad, my grandpa. He was the person I was named after and he loves me a lot. He always donated money to the Walk for the team every year since we started walking. He really wanted us to find a cure the most in the whole world.
ANTHONY: What is the team fundraising goal this year?
FRANK: $6000. FJ’s individual goal is $5000. It’s always a trick to set a goal and tough to get people involved if they are not directly affected, as I’m sure you know. The team has been absolutely fabulous though. Everyone is so busy but so extremely supportive and the feeling of love for Frank John has been amazing. So many people show up every year for him, rain or shine. And we’ve had rain, shine, wind & cold. And they come anyway.
The first year we did this, setting a goal was obviously an uncertain thing, at best, and the goal changed a few times along the way. Not knowing what to expect, I started low – I think about $1500 because that was recommended as an average for a particular type of fundraising effort like ours and for a first time. That year we raised over $7000, our best year to date.
ANTHONY: Where can people go to donate?
FRANK: JDRF offers a secure website for every team walker to set up their fundraising page. Frank John’s personal page is Frank’s Footers. From there you can donate to sponsor him at the Walk, join the team, access the team’s page to see who is on the team, and get hosts of information about JDRF itself, current research, life with diabetes and other ways to get involved in the fight against diabetes.
ANTHONY: Frank John, what would you like people to know about diabetes and about the Walk?
FJ: I want them to know that diabetes really exists. People are really suffering from this disease. We also want to let people know where the money is going. It’s going to JDRF who gives it to diabetes doctors and scientists who are working on finding a cure.
ANTHONY: Well, I’m proud that this year I’ll be able to be an active member of Frank’s Footers. I’ll be there with you guys on October 2nd! And I hope all of my readers will follow the link and donate. You’re at $2,000 tonight — I’d love to see you hit your goal before Walk day!