Our FIRST Trip to the Grand Canyon

When my wife Lauren asked me if I wanted to hike the Grand Canyon with my 12-year-old son Calvin, it took less than five seconds to answer “Yes!” Calvin and I both wanted to do something challenging and experience something new. The chance to help FIRST and spread awareness for ichthyosis was the cherry on top.

But was it irresponsible to take our child with ichthyosis into the desert heat to hike the Grand Canyon? This would be an incredible challenge for any child or adult, but Calvin’s skin is dry and cracked – and he is unable to sweat.

Friends warned us not to go. An internet search result listed the South Kaibab to Bright Angel Trail – the route we planned to take – as one of the most challenging hikes in the U.S. The hike covers more than 18 miles with a mile of elevation gain. The National Parks website even recommends against it. Unsettling to say the least.

But Calvin has been showing us he is capable of incredible things since the day he was born with his “special skin” and we vowed never to let his skin be a reason he couldn’t do something. We had to try.

Lauren researched the hike and ordered backpacks, water bottles, inflatable sleeping pads, body glide for chaffing, shorts with zippered pockets, headlamps, electrolyte powders, camping pillows, a packable shade umbrella, and much more.

Once our supplies arrived, we started writing in our newly purchased hiking journals. One of our assignments was to write mantras to help us on our journey. Calvin came up with “smell the cactus,” a play on “smell the roses,” to remind us to take it all in and enjoy the grandeur, and “suck it up, buttercup” to push through the challenges we would encounter. My addition was “W.I.T.,” or “whatever it takes,” knowing that, ultimately, I had to ensure the safe return of myself and my son.

My hope was that the trip would be a gamechanger with our relationship. I hoped that the accomplishment of completing the hike would give Calvin the perspective that the normal things in his life like middle school math class were not that hard and that he was capable of anything.

Joining us on the hike were FIRST CEO Chris Boynton, fellow ichthyosis dads Adam Schlitt and Ben Augenbaugh, and guides Colt and Ryan. The day before the hike, we set up camp and I got my first glimpse of the Grand Canyon. I have no words to describe the view. My human brain could not comprehend the depth, width, or size. The canyon is so massive that you can’t see the bottom from the top. It was incredible!

After sleeping on the ground, our alarms went off at 4 a.m. I was happy to start early as my biggest concern for Calvin was the heat. We were briefed to drink a mix of water and electrolytes frequently, not to drink too much water as it could create a very serious electrolyte imbalance, snack, and apply sunscreen every hour.

Because Calvin was the only member of our hiking group affected by ichthyosis, he was chosen for the honor of carrying the FIRST flag through the canyon. Up to this point the most Clavin had ever hiked in a day was 11 miles at Cedar Point amusement park with a lemonade and a pulled pork sandwich. Sixteen years ago, I was an elite Division I athlete in peak physical condition. Fast forward 30 pounds, a missing ACL, and a head of grey hair later, and I’m about to descend a mile into the earth. We got this!

I feel bad for those hiking later in the day. The sunrise in the Grand Canyon was a religious experience and the best part of the day. The sun beams piercing through the clouds and the golden hues on the rocks were otherworldly. If you are ever at the Grand Canyon, you owe it to yourself to hike at least to Ooh-Ah Point at sunrise. Outside of my camel back immediately leaking down my back soaking my shorts and underwear, the hike down was all about taking in the sights. It was dark and cold, but I didn’t care. I was witnessing the most natural beauty I had ever seen.

At the bottom, we crossed the Colorado River and hiked to Phantom Ranch. We wrote some post cards to be carried out by mule mail, made a collect call on a payphone to Lauren, and cooled ourselves with a dip in the Colorado River. Then we were ready to hike the 10 miles back up the Grand Canyon. This is where our hike turned from a sightseeing tour to a slow race to the finish.

After a particularly sunny uphill climb, Calvin was feeling the heat, and we were both fatigued. We stopped taking pictures and instead focused on putting one foot in front of the other. Calvin and I were in this together. Ryan dropped back to stay with us and encouraged us every step of the way, letting us move at our own pace.

Calvin said “I was tired. I thought it would never end. Like a never-ending staircase”

As we approached one of the last switchbacks, we spotted Ben making his way back down the trail to lift our spirits! The rest of the group joined us for the last 100 yards as Calvin raised the FIRST flag and trudged towards the crest of the canyon. What a proud moment!

Every time Calvin accomplishes something, I feel a flood of emotion. I remember all of the worry we had as first-time parents, magnified by the uncertainty of his skin condition and what his future would hold - it all comes rushing back. Watching Calvin walk the final steps out of the Grand Canyon, embodying all that is possible for a child with ichthyosis, was a powerful moment.

Calvin held my hand as we walked across the parking lot admiring the palm trees. At breakfast we dreamed about possible next adventures – hiking mountains or whitewater rafting.

By talking about the trip and connecting with people on social media, we were able to spread awareness and raise money for FIRST, an organization that has been a support system for us since Day 1. FIRST has provided us with information, taught us how to care for our child, and connected us with parents and other people with ichthyosis who showed us our child would be able to live an exceptional life.

Thank you, FIRST, and everyone who supported us in this once-in-a-lifetime experience.  The amount of love and support we felt was truly humbling. Through all who donated, we were able to raise nearly $10,000 for research, treatments, and the betterment of life with ichthyosis and other rare skin types. We know the funding will help people like Calvin and bring comfort to families who are entering the ichthyosis community. With the support of FIRST, I feel confident these kids are going to continue to amaze us all. Ichthyosis is a superpower.