Date: 05/13/2024

Five members and staff of FIRST and staff made the trip to Arizona to accomplish multiple objectives May 4-5^th.  Preparing for the trip over the last three to four months involved much preparation and training. The one day trip down into the canyon to Phantom Ranch is highly discouraged by the National Park Service with signage at the Visitors Center and trailheads.  The hike is 18 miles with 5,000 feet of elevation gain and unpredictable temperatures.

This year’s crew included Adam Schlitt father of an affected son, Logan; Ben Aughenbaugh, father of an affected daughter, Vic; FIRST staff Chris Boynton; and the father and son tandem of Matt and Calvin Kocher.  Calvin is 12 years old and lives with Lamellar ichthyosis.  Matt’s backpack was a little heavier than the others as he was prepared with more water, cooling towels and nutrition to keep Calvin going.

Each had prepared for the trip in their own way and as they sat eating dinner in the campground prior to the hike, each was a little apprehensive about their level of preparation.

A 4:00 a.m. wake up ensured everyone would get the proper nutrition and time to make any final additions to their backpacks before the short van trip to the South Kaibab trailhead on the South Rim.  The walk began at 4:45 a.m. with headlamps to light the path. The group stayed together as the sun rose and revealed the magnitude and depth of the canyon. Stopping for pictures every 5-10 minutes did not slow the group down as they set a quick pace on the decent in order to better attack the ascent when the temperatures were cooler.  One mule train was encountered near the bottom of the canyon which required the hikers to move off the trail to yield the right of way.  Finally, the five hit Phantom Ranch a little before 9:00 a.m. to rest, send some postcards and enjoy the famous lemonade.

Although the temperatures were in the low 70s, Calvin took advantage of the Colorado River to cool off and soak his clothes.  He never complained but those familiar with ichthyosis knew that such an athletic endeavor with dry heat and high winds was surely angering his skin.

They say going down is optional, but going back up is not. The guide predicted a finish time of 5:00 pm.  Looking at their watches which read about 9:40 am, nobody could imagine walking uphill for the next 8.5 hours. Blessed with fairly mild temperatures in the mid 70s, the group steadily worked their way to the top.  Frequent breaks are needed to keep hydrated or just to catch your breath.  More than one said they could hear their heart beating in their ear.  It was intense but incredibly satisfying to see progress made as you switchback your way up the steep canyon walls.

As the top gets closer and you’ve expended all your energy, you start to see the fresh-looking tourists who venture down the path to get a taste of what the trail is like.  Some wearing flipflops, some carrying large pocketbooks better suited for 5^th Ave, most frighteningly unprepared.  According to the second guide, this group set a record with the “everyone at the top” time of 3:30 p.m.  Everyone felt a personal sense of accomplishment, but one overshadowed by their admiration and pride for Calvin who had truly conquered the canyon.

The five hikers raised close to $30,000 for FIRST and its programs while increasing awareness of ichthyosis within their communities and outside.  The fathers on the trip shared great information with each other and created a small network that will extend beyond Arizona.

Not everyone with ichthyosis is capable of hiking the Grand Canyon. Some may find achieving their daily tasks is equivalent. But Calvin hopes that some will learn from his experience and be inspired to do something outside their comfort zone.