Lily & Henry: Taking on T1D Together

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Lily Coan, a 13-year-old JDRF 2017 Children’s Congress Delegate, has some IMG_1172impressive advocacy efforts under her belt. She’s spoken about type 1 diabetes (T1D) with her Members of Congress, been a mentor for newly diagnosed families and started ‘The Hope Show’—a YouTube channel for kids with diabetes. Her mother Kimberly says of Lily’s diagnosis at age three, “There was so much to learn—a lot of things can go wrong really fast…it’s really scary.” But advances in technology, such as continuous glucose monitors (CGMs), have made managing the disease easier on Lily—and her family. She says, “I cannot imagine still having to give myself a shot every time I wanted to eat something.”

Lily’s brother Henry is four years old and loves swimming and superheroes. In July 2015, Kimberly started noticing the same red flags she saw right before Lily was diagnosed. She checked Henry’s blood sugar and the reading came up high—and shortly thereafter, Henry was also diagnosed with T1D. When Lily heard about her brother’s diagnosis her response was, “Don’t worry, Mom, I got this.” And she has ever since! Lily says, “I felt bad for him because it’s a lot to deal with. But I was ready to help him out.”

Henry looks up to Lily and thinks it’s special that they both have diabetes. His sister helps him check his blood sugar, his pump and his CGM. Henry is lucky to have access to technologies that weren’t available to help Lily manage her T1D just 10 years ago. He even calls his Dexcom CGM his ‘superpower’. Henry says, “When my blood sugar is low I feel like going outside and riding my bike.” Henry likes knowing that Lily understands what it’s like to have T1D. Lily’s advice to her brother is to “think about diabetes in a positive way” and try and help other kids with the disease so they don’t feel alone. Henry has followed in his older sister’s advocacy footsteps by representing JDRF at local corporate events, being featured in a video at a JDRF gala and also serving as a Delegate for this year’s JDRF Children’s Congress.

Lily and Henry are both looking forward to traveling to the nation’s capital. Henry’s 2-year diaversary will happen during Children’s Congress and he’s eager to show off his ‘superpower’ CGM and explain how it works. Lily wants to talk about continued funding for breakthroughs like the artificial pancreas, which will give her—and others with T1D—more freedom.  She also wants to speak about the importance of insurance coverage for people with diabetes and other chronic conditions. She says, “I want to make sure everyone is treated fairly because people can’t help it if they get diseases.” To that end, when Lily grows up she would like to become a cardio-thoracic surgeon or a professional soccer player. Henry would like to be Batman.

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By Kelly DeSola