Local Kids Bring Awareness to Type 1 Diabetes

By Kristin Boza

This is the story of two boys named Sean. From the outside, they’re pretty typical: focused students, energetic athletes and loyal brothers to their respective siblings.

Yet on the inside, their bodies are at odds with themselves. Both boys were diagnosed with type 1 diabetes, coincidentally on the same day a few years apart. This means that their bodies don’t produce insulin, which is essential in order for the body to transport glucose to its cells. With constant monitoring and management, Sean McKee and Sean Healy are able to thrive and bring awareness of the disease to others in hopes that one day a cure will be found.

Sean McKee

sean_mckee

At 10 years old, Christ the King 5th grader Sean McKee has lived with type 1 diabetes for seven years. When he was three, Sean had H1N1, the very serious flu virus that went around in 2009. “He had the flu in October, but by late November he still was recovering,” said Sean’s mom, Julie McKee. “We took him to the pediatrician and they told us to just hang in there and that he would turn the corner.”

In hindsight, it was clear that Sean’s extensive recovery period from the flu was actually the early signs of type 1 diabetes. “He was frequently urinating, really thirsty, very irritable and I was just worried about him,” McKee said. “We couldn’t put a finger on it, but he just wasn’t himself. He also was very hungry; one night he got out of bed in the middle of the night to eat a banana.”

On Dec. 9, 2009 the family was decorating their Christmas tree. “Sean became obsessed with our new refrigerator’s water filter. I finally had to put a lock on it because he kept getting water. But a few minutes later, I found him laying across the sink in our bathroom, drinking from the faucet. I knew something was very wrong at that point,” McKee said.

The McKees called a family friend/paramedic who saw the signs and immediately tested Sean’s blood sugar. He advised that they head to the ER right away. “Sean was in DKA (diabetic ketoacidosis) and was soon admitted to the ICU. We were very lucky; with prompt treatment, everything was resolved pretty quickly for him. Not every story you hear has that happy ending, so we’re very grateful.” DKA occurs when ketones build up in the body, and ketones are formed when the body burns fat instead of sugar/glucose.

“Even though we had a feeling that something was wrong with Sean, I couldn’t have imagined this. It was so strange, we were upset but had a small feeling of relief that we had an answer and we were going to be okay and treat it effectively,” McKee said.

Over the last seven years, the McKees have managed Sean’s diagnosis with a combination of careful planning and constant monitoring. “We still have a happy life with lots of joy in our home, but the biggest change is that we can’t be spontaneous in the same way as before,” McKee said. “You can’t leave your house without supplies, including insulin and extra supplies for his pump, and lots of snacks. There’s no room for error at all, and that weighs on you.” The family also relies on meal planning and maintaining regular meal times in order to keep Sean’s blood sugar properly regulated.

Sean wears two medical devices attached to his body at all times: an insulin pump and a glucose sensor. Despite the glucose sensor, Sean still needs to test his blood sugar with a needle prick several times a day to ensure he’s staying on top of any changes.

Sean is very active and plays a variety of sports, and his teams require that a parent be at every practice and game in order to monitor him. “We adjust his insulin and check sugar levels and make sure he’s properly hydrated and fed [during sports],” McKee said. “It’s a different routine than you would have for your average kid, but he’s able to play and he’s not missing out on anything in life, which is so important to us.”

In August, Sean received a diabetic alert dog named Ray from the Ron and Vicki Santo Foundation. Although Sean does wear the glucose sensor and his parents get a live feed to their phones from it, there is a delay in detection. But Sean’s sugars tend to drop very quickly, which can lead to a very dangerous situation. “We thought about getting a service dog for a long time,” McKee said.  “But the costs associated with the training were impossible for our family.” Expenses can be up to $18,000.

McKee filled out an application with the Ron and Vicki Santo Foundation and soon received a call from Vicki. They thought Sean was a perfect candidate for the program. The Foundation provided most of the expenses and Ray was trained for a year in Colorado.

An integral piece of Ray’s training was capturing Sean’s specific scent when his blood sugar is low. “We’d send in shirts that Sean wore when he was low, and we had to put his blood and saliva all over the shirt. I would overnight it packed in dry ice to Colorado so the dog could learn his scent,” McKee said.

Ray arrived at the McKee house with his trainer, who spent five days with the family to help them get to know one another and teach them the commands. When Ray senses a change in Sean’s sugar levels, he gets excited. “Sean will ask him ‘what?’ and Ray will let out a bark. Although he’s not trained to detect sugar highs, he has caught a few, and he’s been very consistent with the lows,” McKee said. “He’s really amazing.”

Ray, Sean, Julie and her husband Luke, and sons Luke and Timmy were all featured in a recent Comcast SportsNet Chicago segment. Sean told the story of his time on the football field; it was a windy day and the wind caught his breath and Ray smelled it, barking from the sidelines. Sean’s sugar tested really high at that time. Sean also had the honor of throwing out the first pitch at a Cubs game — and Ray was there too.

While Ray isn’t allowed to accompany Sean to school, the chocolate lab has been a lifesaver during sports, at home and while out in the community. “We’re getting used to going out in public with a dog, it’s really been a great whirlwind,” McKee said.

Sean Healy

Similar to Sean McKee’s story, Sean Healy was diagnosed with type 1 diabetes when his parents, Becky and Dan, noticed he was out of sorts, drinking and eating ravenously, and going to the bathroom every five minutes. “Looking back, he was probably sick for a while leading up to his diagnosis, but he had none of the illnesses (such as the flu) prior to that that usually trigger type 1 diabetes,” said Becky Healy. “He was admitted to the ER directly from his pediatrician’s office the morning I brought him in.”

Sean was six when he was first diagnosed, and now the 11-year-old Sutherland 6th grader has learned to not let his diagnosis slow him down.  “When he was first diagnosed I thought I would just follow the ‘rules’ of what he should eat and how much insulin I should give him, and everything would be fine,” Healy said. “But it’s so much harder than that. Things such as sleep, growth and exercise affect his blood sugars, as well as the types of food he eats. He has to carb count everything and give himself insulin accordingly.”

Sean also wears an insulin pump and glucose sensor to help him regulate and monitor his blood sugar. “We need to make sure we’re stocked with his supplies and insulin at all times, which is challenging. We wake up several times in the middle of the night to monitor his blood sugar, and we always have to make sure he carries sweets and wears his insulin pump to treat high or low blood sugars,” Healy said. “He is so mature and very good with monitoring himself. He has so much more responsibility than I wish he had to have at his age, but we are incredibly proud of his positive outlook on type 1 diabetes. His attitude is remarkable.”

Sean’s insulin pump delivers insulin to his body via tubing rather than having to do multiple shots a day. “This site needs to be changed and the pump needs to be refilled with insulin every three days, and it is sort of ‘fired’ into his body with a spring-loaded needle. It should stay in place for three days, unless he jostles it or it’s ripped out during sports,” Healy said.

His Continuous Glucose Meter (CGM) gives a real-time reading of his current blood sugar, rather than having to do finger sticks all day. “He still has to do a finger stick morning and night to make sure the CGM is calibrated correctly, but it’s so much easier than before when we were making him test all the time,” Healy said. “This is also fired into his body with an even bigger needle [than the insulin pump], and he has been rotating the site back and forth between the backs of his arms. It’s about the size of a AA battery and it sends a signal via Bluetooth to a device that looks like a pager that he wears on his belt.” Healy also gets a message to her cell phone, so she can monitor his blood sugar from afar.

The CGM has given Sean’s parents peace of mind, particularly while he’s sleeping or playing sports. “We don’t have many nights where it doesn’t go off in the middle of the night, but the upside to this is that we’re hoping to prevent him from having long-term complications down the road,” Healy said.

Sean is a JDRF ambassador, which he got into because of Mary Anne Bryan, a fellow St. Barnabas parishioner and Sean’s religious education teacher. Bryan is the site manager for a JDRF walk-in and was impressed with Sean’s outspokenness. Sean has spoken about life with type 1 diabetes to corporate offices that sponsor JDRF, including McDonald’s and Marshall’s. “We have had such great experiences at these speaking engagements, and we can’t say enough about how warm and generous Marshall’s is, especially,” Healy said.

Sean is happy to share his story. “I decided that I would do it because I know that not too many people like speaking publicly … and I like speaking to large amounts of people,” Sean said. “I talk about how I manage diabetes, the differences and similarities, and the activities I’m able to participate in. I like spreading the word!”

As a super-active kid, Sean plays basketball, soccer and volleyball, and is interested in getting into lacrosse. “Usually I wear my medical device and if I hear it beep I’ll check it mid-game,” he said. “My devices have made my life so much easier.”

Sean is driven to educate others, particularly his friends and the parents of kids who are recently diagnosed. “I just want people to know that I’m just like them. I don’t want them to think I’m a cyborg [because of the medical devices], and I don’t want them to think I’m any different from them just because I have diabetes. I fit in with the crowd, and in fact a lot of my friends will say something when they hear my device beeping and will ask if I need insulin or candy. My friends are really good about it,” he said.

Sean is the child oldest in his family, followed by Megan, 10 and Erin, 6. As if the responsibility of being a big brother wasn’t enough, he’s also responsible for ensuring his blood sugars stay where they need to be. “My husband Dan and I are continually proud of Sean and his positive attitude, as well as impressed by his ability to discuss such a personal and challenging subject. He welcomes anyone asking him questions about what the devices attached to his body are, and he’s able to answer pretty much all questions about type 1 diabetes and what it means to be diabetic,” Healy said.

The Healys, the McKees and the Durkins, another area family with a son with type 1 diabetes, are a part of the Beverly Brigade JDRF team. Last year, they raised $20,000 in support of diabetes research. For more information on type 1 diabetes or to make a donation, visit JDRF.org.

 

 

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