Haley's 2014 JDRF Fund-A-Cure Speech
This past summer -on August 4th to be exact - I did something. I trudged through a blizzard in running shorts atop Mt. Whitney, the highest mountain in the continental US to raise money for JDRF.
I am 16 years old, and for more than half of my life I've unwantedly been attached at the hip with type 1 diabetes. Or attached at the pancreas, I should say. Along with my brother Ethan, we spent 20 days hiking 221 miles through the Sierra Nevada’s; up and down some of the tallest mountains in America, with 39 pounds strapped on my back. Every step of the 46,000 feet of elevation gain and 38,000 feet of elevation loss with very little feet of flat ground, was for our fundraiser, Summit Diabetes to support the work of JDRF.
It was hard. Raining 12 of the 20 days, hiking in the darkest of night, blisters, endless swarms of mosquitoes, bear encounters, you name it- we endured it.
But then, throw diabetes into the mix. On Day 5, I suffered a low blood sugar as hail pelted down atop our first mountain pass that was so high, only rock existed. In total, I experienced 77 high blood sugars and 56 lows. More often than not, the graph on my Continuous Glucose Monitor looked similar to the elevation profiles of the mountains we were climbing. It may have done damage to my body; it certainly made climbing harder- but it was worth it. Because the money we raised, just like the money raised tonight, is going straight toward encapsulation research. It's going toward something that will eliminate all of the problems that diabetes caused on the trail, in each and every day of my life, and in my future.
The difficulty managing this disease on the trail was mirror in comparison to managing it each day. The breaks Ethan and I took to treat the highs and lows were equivalent to the daily breaks I take which disrupt my work, tests, sporting events, driving and even my sleep. Living with this disease means my family and I interrupt our lives - putting pressing matters on hold - while trying to mimic the role of a vital organ using instruments, needles, lancets, tubing, and little machines.
This role we consciously play to survive will never be perfect and its imperfections lead to problems with our hearts, eyes, limbs, kidneys- practically every organ in our body. Leaving us with a shortened life span.
The emotional toll is just as large. High and low blood sugars without any comprehensible reason. “Off days” when everything goes wrong and you are a human ping pong ball bouncing back and forth between high and low blood sugars. Or, when people fixate on the bulky plastic patch attached on my arm. But, my most dreaded moment: an insulin pump chiming like Beethoven’s 5th symphony and every head turns my way. I am resilient. And I may not show it, but yes, it bothers me.
All these things-are a part what it is like to have type 1 diabetes today. But with encapsulation, all of these things could vanish tomorrow.
Diabetes research has definitely come a long way and many advancements have been made, for which I am grateful. Many of these, because of JDRF’s laser focus and funding. We're getting close to our summit. Encapsulation might not be a cure, but it's pretty darn close.
Let’s go back to that freezing cold day atop Mt. Whitney. It was the twentieth day of our trek. After traversing more than 200 miles, dreaming of finally reaching the top, we had made it to a point where we could see the summit- no more than a half a mile away.
But we didn't make it.
Ill prepared for such unusually cold weather, with wet pants and complete body numbness, we slowly pressed onward, trying not to fall along a ridgeline with a significantly large death-insured drop-off. It was at that time when we realized our clothes wouldn't be warm enough and our gear wouldn't be good enough to make it to the top.
So, half a mile from our summit, we turned around from what we thought was our most wanted goal.
But tonight, ladies and gentlemen, it is a different story. The path to life without type 1 and the path I took this summer are very similar- but the outcomes can be different. After a long, hard journey, the summit is in view. Encapsulation is on the horizon. But unlike Mt. Whitney, we have the ability to make our final push.
Please join me tonight, as we ascend further to what will be the most life-changing advancement since the discovery of insulin. If there has ever been a time to donate to this cause, it is now. Join me on the path to turn type one into type none- and let's summit diabetes.