Diabetes: A Family Affair
In a June blog post, we profiled the effort of husband and father, Scott Kasper, to raise money to help find a cure for diabetes with the Hope on 2 Wheels bike ride. While learning about Scott’s event, I found his family’s personal story very compelling, and I want to share it with all of you.
Both Scott and his wife Rachel were familiar with diabetes long before two of their three sons were diagnosed with type 1. Rachel initially learned about diabetes while growing up, when her older sister and cousin were diagnosed. Her knowledge and understanding continued to grow when just out of college, she started doing beta cell research for the Joslin Diabetes Center in Boston. Scott’s knowledge of diabetes came from working as a paramedic and treating several people with diabetes-related emergencies while they were on their way to the hospital.
Although Scott and Rachel had a general understanding of diabetes, they were caught off guard when Jake, their youngest son, was diagnosed with type 1.
“That rocked our world,” Scott recalled. “You can never be prepared when diabetes comes into your own home.”
A few years later Scott and Rachel’s oldest son, Matt, was diagnosed with type 1 as well.
“If you think your world gets rocked when you have one child living with diabetes, it’s catastrophic when you have two,” Scott said.
However, Scott always tries to find something positive in any hardship. Since Jake was the first child diagnosed, Matt already knew how to take care of himself and the learning curve wasn’t quite as steep.
“He did a really good job as an 8-year-old because we had involved all of our children in Jake’s treatment along the way,” Scott said.
Scott also thinks it’s important for others to understand what life is like for Ryan, their middle child, and the only brother who isn’t diagnosed with diabetes. Scott says that Ryan goes to bed at night wondering when it’s going to happen to him. However, it wasn’t until he was photographing Matt and Jake with words written on their hands describing what it was like for them to live with diabetes, that he realized how their diabetes was also affecting Ryan.
“I started with Jake who came up with his word instantaneously and said, ‘Brave.’ Then I moved on to Matt, who is shy and prefers to forget he was ever diagnosed. While I was waiting for Matt to give his answer, Ryan interrupted several times. I told him to wait, but Ryan continued to interrupt. Finally, Matt responded and said, ‘It’s difficult. My life is difficult.’ After I finished photographing Jake and Matt, Ryan chimed in again and said, ‘I wanted to tell you my word. I wanted to tell you that diabetes makes me feel invisible.’”
“My heart sunk into my stomach when he said that because I had been completely ignoring him, and he wanted to participate,” Scott said. “When I tell that story, everyone finds Ryan’s part the most moving, and he’s the only one who doesn’t have the disease.”
For a family with three kids, two living with diabetes, the Kasper’s world revolves around the disease. “I can’t tell you how many times Ryan has missed soccer practice, or our plans got cancelled, or we couldn’t go out for ice cream after they got their report cards with all A’s because someone’s blood sugar was too high.”
Despite the many last minute schedule changes, Ryan understands that what Scott and Rachel are doing is important for his brothers. Ryan also gets involved. Just recently, he volunteered alongside Jake and Matt at JDRF’s Ride to Cure in Burlington, Vermont in July.
It’s no surprise that super-dad Scott has super-kids! In addition to his mission to help find a cure for diabetes, he seeks to teach his kids about charity, giving to others, volunteering and being a contributing member of the community. We would like to thank Scott, sincerely, for sharing this glimpse into his family!
Also, if you like the photos of Jake, Matt and Ryan expressing their feelings about diabetes via their hands, be sure to check out more of these type of expressions via the Word In Your Hand program.
All the best,
Disclosure: Scott Kasper received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.