“Camp Jaffe” Unites Two Families Living With Diabetes

The Jaffe-Loman cousins at "Camp Jaffe": Nathan Jaffe, Rubie Loman, Charlotte Jaffe, Emmaline and Sarah Loman, Lilly Jaffe and Ella Loman

Five years ago last month, our family experienced the life-changing medical miracle that allowed our daughter Lilly to go off insulin forever. Thanks to the University of Chicago and Kovler’s Graeme Bell, PhD, Lou Philipson, MD, PhD and Siri Greeley, MD, PhD who properly diagnosed her with Monogenic Diabetes, Lilly no longer wears an insulin pump, takes shots, counts carbs or tests around the clock, and her A1cs have been consistently 5.7.  The freedom and peace of mind for our family — and now the hundreds of others diagnosed with Monogenic Diabetes – is priceless. We still pinch ourselves.

It is hard to believe that it has been five years already, yet Lilly barely remembers ever being on the pump. Every so often, we bring it out to count our blessings and remind ourselves of the miracle that changed our lives. Lilly muses about the pump’s pretty, shiny blue cover, but it is only vaguely familiar….no longer the life-line that was so central and critical to her health and well-being.

Sarah and Rubie Loman

We continue to be humbled by the magnitude of Lilly’s breakthrough through our two dear nieces who both have type 1 diabetes. Two of my sister’s four girls were diagnosed within a few years of each other. Go figure that, with no family history of type 1 or 2, my sister and I have 3 children between us with some form of diabetes! Sarah Loman (now 19 and a college sophomore) was the first to be diagnosed at age 11 and younger sister Rubie (now 12 and a 7th grader) was diagnosed when she was 8. Both girls are strong, talented and don’t let diabetes hold them back from life and the things they love. They – and their amazing and unflappable parents — rarely complain. They just deal with it despite occasional seizures and constant struggles to maintain steady blood sugars…and just feel normal.

Every summer, their family escapes the Dallas heat and joins us at our Lake Michigan vacation home for a much-anticipated week of “Camp Jaffe.” It is the highlight of the year for all of us. During that week, we revert to “pre-miracle” mode, when life with diabetes was constantly in the air and coloring nearly every moment of our lives. Testing kits, test strips, juice boxes, glucose tablets, glucagon, insulin pens and pump supplies surround us and are as normal as the sand and beaches of Lake Michigan. Then there is the enormous psycho-social back drop – worry, hyper-planning, delayed and/or cancelled outings, disappointment, second guessing, guilt, etc. And of course there is the omnipresent never-completely-let-your-guard-down mode that diligent kids and their parents must lock in to. That was our life 5 years ago and it is the life that my sister’s family lives every single day – times two.

To think…first cousins with such a stark and humbling contrast in diabetes treatment. Lilly simply takes pills twice a day and tests her blood sugar at night before bed. That’s pretty much it in terms of her diabetes management. We look forward to the day when our nieces and all others who suffer with Type 1 can experience miracles of their own and be liberated from insulin dependence and the consequences of diabetes complications. We hang on the words of Dr. Graeme Bell who told us that diabetes will be conquered “one gene at a time.” We’re holding on to that mantra and are ever-grateful for the work that the Kovler team is spearheading to turn that into a reality.

Laurie Jaffe

To learn more about Monogenic Diabetes, please visit our website or contact us at the University of Chicago Kovler Diabetes Center.