Meet Super Lou Lambert!
Louie has loved superheroes for as long as we can remember
Since toddlerhood, Louie has loved superheroes and all that they stand for: fighting evil, never giving up, and working as a team. Batman has always been his favorite (of course, he declared this AFTER we decorated his entire room with a Spider-Man theme) and he spent his childhood scouring the yard for villains with his twin sister, Sofia, swimming at the pool and the lake with his crime-fighting buddies, and playing tons of sports as heroes tend to do. In the Fall of 2016, he was so thrilled to start kindergarten and meet some new fellow justice defenders.
But right after school began, Louie started getting extremely lethargic. He didn't want to play superheroes when he got home. He didn't even want to go to the school playground with his new buddies. He would literally fall into Carrie's arms on the way out of school every day. It was heartbreaking, but the doctors told us he was just recovering from the walking pneumonia he and Sofia got after the first week of class.
Louie became a superhero himself on October 3, 2016
Over the last week of September 2016, Louie started drinking more water than normal and started waking up to go to the bathroom several times a night. When he got up eight times in two hours on the night of October 2, we knew something was very wrong. When we took him to his doctor first thing the next morning, he was immediately diagnosed with type one diabetes (T1D) and admitted to Children's for the next three days. But during a time when he had every right to feel scared, anxious and sad, Louie instead showed his parents (who were definitely feeling all of those things!) how to really fight evil: find your strength and stay positive. He laughed his way through his shots and tests. He made jokes and charmed the nurses even in the middle of the night. He learned the basics of the medicine and said "LET'S DO THIS" when we had to give him injections. Super Lou was on the scene!
Super Lou uses superhuman strength to fight T1D every day
Since his diagnosis, Super Lou has proven to us that he truly has superhuman strength. T1D made Super Lou insulin dependent for the rest of his life, which means he has to be given the right amount of insulin for the foods he eats and he also needs insulin when his blood sugar goes too high. Super Lou receives this insulin via shot or via insulin pump and we check his blood sugar numbers by poking his finger 8-12 times a day and by looking at the reading from a continuous glucose monitor (CGM) that is implanted on him once a week. Super Lou takes these shots, pokes, pump and CGM changes like a superhero would: without tears, whining, complaining, procrastinating or even waking up. This is amazing since Super Lou has had at least 1600 insulin shots, 35 pump site changes, 60 CGM changes and over 2400 finger pokes since his diagnosis a little over one year ago.
Super Lou's superhuman strength is best shown by his incredible attitude
But Super Lou’s superhuman strength isn’t just in his high tolerance for pain and needles -- it is in his attitude and bravery when T1D gets in his way of living the life of a “normal” six-year-old. Every day, Louie’s blood sugar can go very high or very low quickly, which can be scary, can take time to correct and can feel pretty awful for Louie. Super Lou accordingly spends a lot of time missing out on classes and events he loves because he is riding out highs and lows in the nurse’s office (as pictured above), on the sidelines at sports games or birthday parties, or even at the hospital, like last month when a routine stomach flu turned life-threatening. But instead of being upset about missing out on good times, he uses his “off time” to his advantage: he plays games, hangs with a friend, makes art and keeps our amazing school nurses entertained. He routinely tells us “you guys, seriously, it didn’t ruin my day” when we ask about having to miss something because of T1D. That is superhuman strength.
Super Lou uses brainiac smarts to outwit T1D daily
Super Lou also has a super power of brainiac smarts. His life revolves around estimating the amount of carbs he will eat, applying different ratios to his carb counts to arrive at an insulin dose, guessing how to reduce or increase his dose based on exercise or inactivity, and responding to arrows and alarms from his CGM indicating whether he is trending low or high. Super Lou can do all of those things on his own. As a six-year-old kid. And while we always supervise his dosing at this stage of his life, it is incredible that he could do most of the work on his own today. Super Lou is constantly applying complicated math, logic and science concepts to his meals, insulin doses and alarms of his CGM every day. Brainiac smarts is clearly one of his biggest superpowers.
His compassion for others makes Super Lou a true hero
Super Lou's compassion for others is what really sets him apart from other superheroes. While Super Lou is the one who suffers from T1D, he is often more concerned with how T1D affects others: he always checks in on his mom to see how she is handling the disease, he patiently takes the time to educate his classmates if they have questions about T1D, and he makes sure Sofia has a role in helping with his care (and gets praise and credit for that help!) so she doesn’t feel left out. But the biggest way he shows compassion is by putting himself out there to help raise money for JDRF to help other kids manage the disease and to help find a cure. Last year, just three months into his diagnosis, we were asked if he wanted to be on the local ABC affiliate to do a news story on a “day in the life” of a newly diagnosed T1D patient. We were hesitant to expose him to “the universe” in this way when he was so new to all of it. But Super Lou said that if it meant helping other kids and would help find a cure, “WE GOTTA DO THIS.” And he sure did. Super Lou’s compassion (and sparkling personality) got a lot of attention and helped us raise over $10,000 for our first JDRF One Walk just weeks after his diagnosis. Super Lou to the rescue!
Super Lou in Pictures
Meet our favorite superhero, Super Lou.
"Fun" Facts About Super Lou's T1D
What is T1D?
Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone people need to get energy from food. T1D occurs in both children and adults and has nothing to do with diet or lifestyle (you do NOT get T1D from eating sugar!!!). There is currently nothing you can do to prevent it and there is no known cause for T1D.
People with T1D must monitor their blood-sugar level between 6-12 times per day/night with blood draws, inject insulin multiple times a day/night or receive insulin continuously through a pump, and carefully balance their insulin doses with eating and daily activities throughout the day and night. However, insulin is not a cure for diabetes. Even with intensive disease management, a significant portion of their day is still spent with high or low blood-sugar levels, as you can see from a typical 24-hour readout from Louie's CGM at left. These swings are all day and all night long, no matter how much we try to "control" Louie's blood sugar. The swings place people with T1D at risk for devastating complications such as heart attack, stroke, blindness, kidney disease, amputation and diabetic ketoacidosis (DKA).
At this stage of Louie's life, we worry most about severe hypoglycemia (or extremely low blood sugar, shown as red dots in the graph at left). It can happen at school out of nowhere (like at recess at 11 am at left) or overnight in a heartbeat (like when we are all asleep at 4 am at left) and, in either case, Louie does not recognize the signs--he has "hypoglycemic unawareness." Thankfully, we have a continuous glucose monitor (CGM) implanted on Louie that alarms us to extreme lows or highs, but it isn't perfect and doesn't always work. We are accordingly on alert literally all day and several times a night to prevent against hypoglycemia and/or to get Louie out of a hypoglycemic episode (usually with a juice box -- of course, Louie dutifully chugs a juice box on command in the middle of the night and has never once woken up). It's kind of like having a newborn. But with a little survival panic thrown in. All the time. It's quite the disease!
Facts and Myths About T1D
Myth: T1D is caused by eating too much sugar or being obese.
Fact: Sugar intake and obesity have nothing to do with the onset of T1D. While we still do not know exactly what triggers the onset of T1D, scientists believe that both genetic and environmental factors are involved.
Myth: Only children are diagnosed with T1D.
Fact: While children are the age group most frequently associated with T1D, formerly called “juvenile diabetes,” it is regularly diagnosed in teens, young adults and adults. You can develop T1D at any age.
Myth: You can cure T1D by taking insulin.
Fact: Taking insulin keeps people with T1D alive, but it is not a cure.
Myth: People with diabetes can’t or shouldn’t eat sugar or sweets.
Fact: While limiting sugar intake can be a part of a healthy diet, people with T1D can work sugars and sweets into their diets just like a person without T1D. Sometimes sugar is actually necessary. If a person’s blood-sugar level drops too much, sugar, often in the form of juice or glucose tables, is required to raise it and correct hypoglycemia (low blood sugar).
Myth: T1D is contagious.
Fact: T1D is not contagious. T1D does not spread from person to person, but families with a history of autoimmune diseases may have more than one family member with T1D.
Myth: People with T1D will go blind.
Fact: While some people with T1D have complications, many live with T1D for decades without any complications. Every person is different and some are more genetically predisposed to complications, but optimal control of blood sugar is proven to significantly lower the risk of complications.
Myth: You can cure T1D with diet and exercise.
Fact: There is no cure for T1D. Healthy eating and exercise can help people with T1D maintain better blood-glucose control, but there is no cure.
What's the difference between type 1 diabetes and type 2 diabetes?
Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. People with T1D must take multiple injections of insulin daily or continually infuse insulin through a pump to stay alive. T1D occurs in both children and adults and lasts a lifetime.
Type 2 diabetes (T2D) is a metabolic disorder in which the body still produces insulin but is unable to use it effectively. T2D is usually diagnosed in adulthood, but many adolescents are now being diagnosed with it. T2D is controlled with healthy eating, sometimes pills and/or requires insulin injections.
Symptoms of T1D
Your body might be telling you that your kidneys are trying to expel excess sugar in your blood if you experience frequent urination.
The resulting dehydration may then cause extreme thirst.
Along the same lines, the lack of available fluids may also give you dry mouth and itchy skin.
If you experience increased hunger or unexpected weight loss it could be because your body isn’t able to get adequate energy from the food you eat.
High blood sugar levels can affect blood flow and cause nerve damage, which makes healing difficult. So having slow-healing cuts/sores is also a potential sign of diabetes.
Pay attention if you find yourself feeling drowsy or lethargic; pain or numbness in your extremities; vision changes; fruity or sweet-smelling breath which is one of the symptoms of high ketones; and experiencing nausea or vomiting—as these are additional signs that something is not right. If there’s any question, see your doctor immediately to ensure that your blood sugar levels are safe and rule out diabetes.
Learn more about T1D
Sorry. We know this is a lot of information (thanks, JDRF!) but I promise we tried to keep it simple! It is actually totally ridiculous how much you need to know in order to live and prosper as a human being with this disease (and/or take care of a human being who has this disease). But if you're a total dork and want to know even more about T1D than what is on this page, please cruise through the JDRF website, which can be accessed via the button below. Or you can ask Super Lou himself about T1D basics on February 23 because he knows an INSANE amount about the disease. It might blow your mind.