After her son was diagnosed with diabetes at age 2, she and her family have opened their hearts to help others.
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
For half of his young life, 4-year-old Leeland Graham has been dealing with the effects of – and treatment for – type 1 diabetes. Diagnosed at Riley Hospital for Children when he was 2, Leeland and his parents, Aaron and Isabel Graham, have had to make major changes to everyday life.
“It turned our world upside down in a matter of seconds,” acknowledged Isabel Graham. “T1D requires constant monitoring, careful calibrations and precise planning in everything we do to make sure that Leeland can live a healthy fulfilled life.”
Symptoms of the life-threatening disease include increased thirst, urination, weight loss, hunger, fatigue and blurred vision. Standard treatment includes insulin therapy and education in managing the condition, which can damage organs if left untreated.
The Grahams, who live in Westport, Indiana, knew nothing about type 1 diabetes before their son was diagnosed, but since that day, they have worked to share their knowledge and experiences with other families who might be facing the same condition.
They are sharing more than that as well, raising money to buy toys, books, stickers and other items for the Riley Children’s Health diabetes clinic, where Leeland sees nurse practitioner Amy Hatton and the endocrinology team every three months.
It started small, with the family buying a handful of T1D Barbie dolls and books to give to the clinic last year. The Barbie Fashionistas Doll is the first Barbie featuring an insulin pump, a continuous glucose monitor and accessories to reflect real-life diabetes management.
This year, the Grahams went bigger, inviting friends and family to donate items from an Amazon wish list in June to celebrate Leeland’s birthday month, as well as the birthday month of his diabetic alert dog, Goose. It is also the anniversary of his diagnosis two years ago.
With their support, the family was able to donate diabetes-themed children’s books, more T1D Barbie dolls, stickers, T1D bracelets and medical alert tags, low blood sugar snacks, and devices resembling a bee that combine cold therapy and high-frequency vibration to reduce pain and fear during injections and other needle procedures.
They also created diagnosis goodie bags with a special note from Leeland for newly diagnosed kids.
“Leeland and his family brought in boxes of items to give to other families,” Hatton said. “They are super grateful and want to advocate on behalf of others.”
Next year, they hope to make the fundraiser even bigger.
“We want to grow it to where we can make an impact on every child with type 1 diabetes at Riley,” Leeland’s mom said.
Sharing not just gifts but their story is important, she said, because her family understands how life can take a turn overnight.
“We really want parents and kids in this situation to feel that they’re not alone and that there are lots of resources out there,” she said.
“Diabetes takes no days off,” Graham added. “We are constantly watching blood sugar numbers (day and night), doing math calculations surrounding food intake and insulin needs, analyzing graphs as insulin needs change, and playing detective when numbers go wonky.”
Things they never realized had an impact now are things they have to think about constantly, she said.
“Parents of type 1 diabetic kids carry all of this, proudly, so their children can just be kids as much as possible,” she said.
Still, kids like Leeland still have to feel the pain of the injections, wake up from sleep to eat when their sugar is low, wear medical devices, and see other kids look at them differently sometimes.
“Type 1 diabetes is an invisible disease in so many ways, and without the T1D community, it can feel so isolating and overwhelming,” Graham said. “Nothing can truly prepare you for watching your child almost die, spending three days in the ICU, and then being sent home with the job of keeping them alive.”
T1D patients are “absolute warriors,” she said.
Riley offers comprehensive care for children with type 1 diabetes, from initial diagnosis to ongoing outpatient management. It is also a leading site for type 1 diabetes research and new treatments.
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