I was invited to be the keynote speaker at the International JDRF Fall Retreat for researchers and scientists. It was one of the most difficult speeches I have ever given. I was very taken by the emotion I felt when I stood up to give the following speech:
Good morning. Thank you for inviting me here to speak to you today. My name is Rachel Dickinson. My son’s name is Sam. Sam. You are connected to Sam. Sam is connected to you. You are so important to Sam and to me that it seems strange that we have never met and may never meet again given how much I want for you to succeed.
There is a children’s book by Leo Leoni called Frederick about a mouse that doesn’t seem very busy as the other mice prepare for winter. As they gather food, supplies, and so forth Fredrick gathers up the warmth, colors and sounds of the waning summer. Eventually, their stores run dry and the mice turn to Frederick to share his supplies. It is cold and grey and the mice are hungry. Frederick uses his memory to make stories that sustain them until the spring. Maybe you can put Sam’s story away for a time when you need it in the future in case your stores ever run dry about why you do what you do and how much it means to everyone affected by Type 1 diabetes.
I have two young children. Each day, I see new traits in them that are familiar in various ways. The determination in my daughter’s blue-grey eyes the exact same color as my husband’s. The way my son walks down the street with Harry Potter in front of his nose tripping over roots because he is happily lost inside of a book – it's me in second grade. Long eyelashes that scrape the insides of sunglasses, a love of nature, a wedged pinky toe, a sense of humor, a talent for puzzles or music – these are some of things that make these particular kids mine. These are the familiar things that make us family.
Diabetes was always familiar to me. My mother has had diabetes since I was a child. Her brother, who suffered terrible complications including being a double amputee at the end of his life – the end being in his early fifties – had diabetes. Various grandparents acquired type 2 later in life. Still, nothing could prepare me for the diagnosis I received on October 23rd 2006, Sam had diabetes. He was 21 months old. I was 7 months pregnant with my daughter, Talia.
Could I have prevented this? Was it related to the coxsackie virus he had had a few weeks earlier? Which toy did I let him put in his mouth that caused the virus that ultimately provoked this reaction in his pancreas? It’s a joy to take credit for a child’s wonderful traits, but my smart, beautiful, happy boy had obviously inherited this from us too. Will Talia get diabetes? Or the children’s cousins? I don’t know, but maybe one day you will. Talia asked us once as she was getting her annual blood draw as part of the Trigr study for siblings “when she will get diabetes” and will we be as worried.
JDRF is an amazing entity and has done so much for us personally and for our community. I have a friend whose daughter has a very rare syndrome – maybe a thousand kids in the world have this chromosomal abnormality – and she started a foundation and they just received their first 50K grant. They started a walk in honor of their daughter Sydney – one family, maybe $100k to date. Hope for a thousand families, but really it puts into perspective what it means to have this kind of infrastructure at work toward a cure. JDRF has spent $1.6 billion to date. How much will it cost? Will I still be doing the Walk to Cure Diabetes in 20 years? Going to the 60th Promise Ball? Lobbying the FDA? I expect so, but I hope not.
What does a cure look like? For me, it looks like less worry. Less testing in the middle of the night, less disruptions in the classroom. Less time for Sam feeling badly from being high or low (although you’d never know it because he never complains). Less chance of devastating complications. Prevent? I can’t prevent it for Sam but maybe for Talia or for their children. Treat? Absolutely anything and everything that moves this ball forward to make life easier for Sam gets my support. The new test strips that suck up the tiniest bit of blood? Bravo. Wireless insulin pump (which by the way my mother was also on until she recently turned 65 and medicare coding has determined isn’t a real insulin pump because it’s not a durable medical good based on the disposable pods) great. Connect the pump to the CGM even better, and artificial pancreas even better than that. Reversal? You know better than me if we can re-engineer the immune system but if you think it’s possible I’ll walk for you. Every donation we get – all of the kids friends – preschoolers and kindergartners walking 3 miles on September 30th – they are doing it so you can help Sam live a long life – maybe even one day free of diabetes. This connection between you and Sam is strong.
Our family has a blog about our experience living with diabetes and I wanted to close by reading a post that my husband wrote that seems like a good fit for this team. It’s about insulin and developments in research. And it’s about us. It’s called “Important” - here it is:
A good friend and colleague recently lent me a book titled, “Breakthrough—Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.” I’m only about 20 pages in to it, managing only a few pages a day as I ride the subway (and oddly holding the book up to show off its cover—subconsciously hoping that others will see and somehow understand why I’m reading this book). As its title connotes, this book chronicles the discovery of insulin as a treatment for type 1 diabetes. In 1919, diabetes was a terminal illness, with most patients surviving no longer than a year after diagnosis. A fascinating story awaits me, one that is deeply personal, as my son Sam is alive today only because of the incredible medical advances made less than 100 years ago.
When I arrived home tonight I found a familiar package waiting—one we receive every three months. As I opened this package I was immediately struck by a recent labeling change to its contents. A white, padded, insulated envelope now said, in white letters inside an orange circle,
IMPORTANT
INSULIN
ENCLOSED
I was immediately taken aback—how to read this? Is it missing critical punctuation, so that I might read it, “IMPORTANT—INSULIN ENCLOSED,” or, as written, “IMPORTANT INSULIN ENCLOSED.” Is it important that there is insulin enclosed, or is the insulin enclosed important?
In 91 years we’ve advanced to a world where this life-sustaining hormone arrives at our door every three months. In a contemplative mood, I examined the package a bit more. “FRAGILE, HANDLE WITH CARE” is a common warning, but means so much more in this context. “REFRIGERATE IMMEDIATELY” wouldn’t have been possible in 1919, nor would “UPS NEXT DAY AIR.” This package was addressed to “SAMUEL DICKINSON, C/O FATHER JONATHAN DICKINSON.” I know this means the package is for Sam, to be cared for by me, but I could only read it one way—“Samuel Dickinson is in the care of his father, Jonathan Dickinson.” It’s incredible that in less than a century we’ve transitioned from diabetes being a terminal illness to where Sam’s life is possible due to something that arrives in a cooler bag by next day air. It is essential. It is, to many, a miracle. It is, quite simply, important.
