Hikes of Hope

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

  • Setting out around 11pm tonight! Wayne is being amazing and hiking with me until sunrise because I'm afraid of bears. Thank you to all who donated to CRN.
  • Not the greatest looking sky out there right now according to this webcam. Clouds Rest is the highest point near the top center of the photo, behind Half Dome. Right now, predictions of thunder are limited to tomorrow after 11am, which is fine. But you don't go up to high, treeless places when there's thunder - so if the forecast changes the schedule might need to as well.

HoH Sky 710

  • Elevation at the start

StarElevation 3937

  • 5am

5am 6040

  • Past Half Dome and finally on Clouds Rest Trail

7050

  • Clouds Rest is just 3.8 of the hardest miles ever away. Cystinosis bracelet courtesy Clinton Moore, who is well into his own trek by now.

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.

Fight on.

CloudsRest

  • Here’s elevation from over an hour ago. I’ve been trying to post but reception is spotty. My altimeter spins and won’t settle now. Judging by my topo and switchback position I think I may be at 8800? But to be honest, it could be lower. I intended to be out here 24 hours. I think I’m still ok since I’m faster going down.

8215

  • I’ve had to start making my way down, because I didn’t make it in time and Clouds Rest is now socked in. If I’m honest, I’m also exhausted. So I went from just over 3900 feet to just under 9100 feet and got within a mile of my destination. A 24-hour hike, yes(most likely by the time I get out), a 5700-foot gain, no. I am so disappointed for so many reasons.

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.

  • Finished. Exhausted. Ready to head home. Wanting to wrap everything in Icy Hot patches. Already planning to get those last 500 feet via the standard trail.

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.

logo

CRN Newsletter Signup - Popup
  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

  2. First Name
    Invalid Input
  3. Last Name
    Invalid Input
  4. You must enter a valid email.