With Jessica Jondle
The following posts were originally posted by Jessica via her Classy fundraising page and the Hikes for Hope Facebook event.
Setting out on “A Hike of Hope” to raise money for cystinosis research. Happy Isles (~4000 ft) to Clouds Rest (~9900 ft).
I was diagnosed with cystinosis in 1983, just as cysteamine therapy was in the clinical trial stages. After two years of hemodialysis, I received a deceased donor kidney transplant on August 12, 1999.
In 2011, I learned that cystinosis was taking a toll on my pulmonary function due to muscle wasting in the diaphragm and esophageal musculature. That's when (and why) I started hiking at high elevations. I've made some progress with my lungs, but I know I must be relentless because cystinosis certainly is.
I have one copy of the common 57-kb deletion in the CTNS gene. It's ironic that this deletion, designed to take something away from me, has actually given me so much more than I could ever have imagined.
Let’s Get Started
I don’t know if I’ll make it in time - I know thunder snow is in the forecast - but I just sat down and bawled. I wasn’t supposed to do any of this. I wasn’t supposed to be here. I’m here because of research that came into being right around the time I did. I have had so many friends die. I can’t even tell you. I have survivor’s guilt and while I know God has a plan for me, he has plans for all of us and sometimes I wish they were different.
Thank you for supporting life-saving research. My hope is that children with cystinosis who form friendships with each other at gatherings now grow old together. Have decades-long friendships.
Am I stalling? Yes, of course. I know there are 2500 feet of elevation gain in these 3.8 miles. And I’ve been to Clouds Rest - albeit from a much higher trailhead (Tenaya Lake) - so this just felt a little more important.
I hope I did enough to embrace the intent of why you donated: to break down the limitations cystinosis dictates, either through research or through encouragement.
UPDATE: Jessica exceeded her fundraising goal of $570. Through these efforts she raised over $800 for cystinosis research and important awareness for this rare disease.