Ethan E. - Camp - 2019
Camp Wonder Really is a Wonderful Place!
By: Ethan Edwards (with a note from mom, Erin)
Camp wonder is a fun skin camp in the Bay Area of California, in which they have many awesome things to do.
To Campers/Kids:
Camp Wonder is a place to feel like a normal kid. It makes it possible for kids who would have been unable to go to regular summer camp to attend one where they are treated equally and can safely participate. On the very first day you arrive, you will meet your cabin mates, eat dinner, go to campfire, and then go to bed a little early because some people are very jet lagged and need to sleep (for some people the time difference is so huge that we go to bed at 1:00 which is the time we are used to). In the morning, everyone at camp goes and does the same thing (most days). You could find yourself playing in the meadow, going zip lining, climbing the wall and ropes course, or having a special event. Most days in the afternoon you have free time where everyone in your cabin comes together to decide what to do (going to the pool, board games in the cabin, lawn games, etc). In the evening, you have another special event (after dinner). It is a way to make friends where you won’t be judged on things like different skin, because everyone is going through similar things. The cabins also have air conditioning to accommodate people who can’t sweat. It was an anomaly, but we actually had over a 1:1 camper:counselor ratio. They cover all costs including travel.
For Campers w/ Flights (and the accompanying parent):
Your parents will take you to the airport where you check in, go through security, get to the the gate, etc. At the check
in desk, your parent will get a gate/escort/security pass (heard it called all the things at the airport, Southwest officially calls it an escort pass) and check your bags. At security, you’ll need to take medications and medical equipment out of your bag, and don’t stack them. If you have a cooling vest and additional freezer packs, take them out without stacking them, use extra bins if needed, and try to make sure they are completely frozen prior to security. These extra things combined make it easier and quicker in the long run. On three out of my four times going through security, I’ve gotten pulled for these things (allow for extra time to get through security). If that happens, just be polite and answer their questions. I carry a folder of information from my doctor too. After security, when you get to the gate, check in with them. Young Travelers (YTs) sometimes get preboard, but Unaccompanied Minors (UM’s) board even before pre-board boards.
A note from mom:
Ethan, the practical young man that he is, took a little bit of a different spin on this article than I expected. What he didn’t tell you is that his time in Camp Wonder really was life-changing. More than making friends with the same kinds of challenges that he faces, he learned he is capable. He discovered that he could do something like navigating a cross-country adventure pretty independently. As hard as it was for me to let him travel by himself so far away, I knew it was time and that baby steps towards complete independence are essential for all children. At camp, he met adults with ichthyosis who served as counselors. He had so many stories about what they were up to in their lives and I could tell how positively this impacted him. He has carried around the euros a counselor traded him and talked unendingly about camp and air travel all summer long. His wardrobe has consisted almost exclusively of camp shirts. He can’t wait to go back next year. He even used his frequent flier miles to obtain his TSA pre-check to make his trips through security a little less cumbersome. I feel so fortunate that Ethan was able to experience camp this summer and encourage parents to look into this opportunity. Camp Wonder really is a wonderful place!
- Read about Ethan's fundraising efforts on his family farm when he was younger.
- Read Ethan's story from 2012.
What's Your Story? We'd Love to Hear It!
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
