Zip-A-Dee-Doo-Dah

I thought that this morning I'd start the day off with an uplifting little video. It's of a little girl with ED singing zip-a-dee-doo-dah at a talent show with confidence. 

YouTube video description: "My 4 1/2 year old daughter singing at the NFED Talent Show and 'wow-ing' the crowd. She has EEC Syndrome and is almost completely blind. It just goes to show that nothing can stop her! She ROCKS!"

This video made my heart smile.

Sweating In Alaska

A few days ago, I promised you guys some stories from my Alaska trip as soon as I could get some pictures to go along with them. Well, I finally got a chance to download some photos! So sit down and relax because it is story time.

The only way I can really describe my trip was to say that it was amazing. Of course, the landscape was gorgeous, the people were fantastic, and the feeling of giving back to such a wonderful community was just outstanding. I and a group of eleven others went to Anchorage, Alaska and helped lay down the foundation and the building blocks for a garden for Alaska Child Services and the children in their care. It was just a fantastic experience all around. Now, when it comes like mission trips like this, there are always a couple of moments that seem to stick out more than others, moments that will stay with a person forever. For me, over the course of my trip, there were exactly two moments like that for me: one, when I took part in a sweat lodge, despite my less than adequate ability to sweat, and two, when I climbed a mountain. 

Now something that I want to clarify before diving any deeper into the stories was that with both of these events is that people told me I could not do them. In today's blog, I'm just going to talk about the sweat lodge, but I'll go into climbing the mountain later this week. With the sweat lodge, once the man who in charge of our mission group heard that not all of my sweat glands work, he was ready to drag me kicking and screaming out of that sauna like environment. Unknown to him, however, I can be an extremely stubborn person. Just because my epidermis isn't exactly normal doesn't mean I can't participate in activities that get a little hot. Similarly, just because a boy can't sweat at all doesn't mean he can't play baseball, or just because a man doesn't have teeth or hair doesn't mean he can't become a well known actor (Michael Berryman comes to mind here). Our ED does 

make us different from others, but it doesn't mean we are 

incapable of doing what others can do. We are just like everyone

else, perhaps minus a few teeth. 

Anyway, as I was saying before, I do have a habit of being a 

rather stubborn person at times. I felt like this was an opportunity

that I really shouldn't miss, so I called my mom and once our

group's chaperon heard from her that she thought it was alright

for me to go in as long as I was hydrated and had the opportunity

to leave if I needed, he relaxed. I don't know how to explain the

actual feeling of sitting inside the sweat lodge. The only words that

comes to mind are rejuvenating and a kind of relaxation that 

borders on liberation. Of course it was incredibly hot. There were

ten of us in a room about the size of a non-luxury minivan sitting

around a furnace topped with steaming stones that hissed violently

whenever water hit their surface. We sat in there for an hour and

a half praying (it was a religious experience and a big part of the 

mission trip for us) and it was such a moving event, not only

because it was such an intense form of prayer, but because I was

to actually participate and last through the entire thing. In my

childhood, whenever it would come to sports or the heat, or even

my junior year when I tried out for drum corps, it always came

down to whether or not I'd be able to participate because of my

sweat glands. This time, though, I could feel the heat surrounding

me, seeping into my lungs with every breath I took, and I over

came it. It was the first instance that I can remember where

my genetic disorder didn't play a part in my consideration with

whether or not I should push forward or leave; I just sat and prayed,

and it was wonderful. 

I guess what moved me the most about this experience was that

I felt like I was no longer held back by worry or doubt. Just because

I have ectodermal dysplasia doesn't mean my life has to be different

from anyone else's. And the same goes for everyone else with ED. Just

because someone has a genetic disorder doesn't mean his or her 

life is change for the worse. It just means he or she is a little different,

like I am. It doesn't change someone's quality of life in a bad way.

If anything, it improves quality of life because it makes a person

more aware of how blessed they are. At least that is how I view 

my own personal disorder. Others may disagree with me, but that

is something that really stood out to me on my trip to the sweat 

lodge in Alaska. And the best part about it? My mom's response 

when I took a sweaty picture of myself afterwards and sent it to her:

"You can sweat! YAY!"

Follicle Fate

Oops! I typed out this blog last night only to hit save instead of publish because I was so tired. Sorry for that! Today I have two videos to share with you, both dealing with a charity called Follicle Fate. The founder, Sean Vora, does a much better job of explaining his vision and charity than I ever would, so I'll just leave it to him to explain. The first is a welcome video and an explanation of his charity, and the second video is the end result of his efforts. Enjoy!

Don't Sweat It Walk Update

Today's post is going to be a short little thing because I'm rather short on time tonight. But I do have exciting news! The woman I emailed about hosting a Don't Sweat It walk has replied to me! And at a kind of scary fast rate, at that. I suppose that just means she is great at her job. Anywho, when I emailed her I just had a few simple questions ("How old do you have to be to host a walk? I host a walk at nineteen?", "Is it worth it to host a walk in Texas, or has everyone with ED up and left the state?", etc. ) and she answered everything she could. She told me an approximate number of people with ED who live in Texas would sit somewhere at about two hundred. If that's the case, then hosting a walk wouldn't be unreasonable at all, assuming that I could get in touch with those people and they came out to support and brought some friends with them. She also stated that since I'm over eighteen I can host the event by myself (or at least sign all the paperwork by myself) and that the walk didn't have to be in June. June just happens to be when most of the walks take place. Along with all that, as well as the numbers for some other people I might want to contact if this thing actually happens, she sent me the majority of the forms that I would need to fill out in order to host a walk. A lot to take in in just a couple of days right? This went from being a little idea to an actual possibility over the course of a weekend! I'm actually getting pretty excited over this! Anyway, that was my little update for today. I'll keep you posted as I learn more, and if this walk ends up happening you guys will be the first to know! Can't wait to start walking!

Swim for Sweat - James Paisley Video

For today's post, I thought I'd post this awesome video I found while surfing youtube! I'll be honest, I was first browsing work out videos in the hope that I could actually will myself into working out today, but that didn't happen, so instead I went looking for something to share with you guys! That is when I found this little beauty. I personally find it really inspirational. It is a short video (five minute video clip/photo montage set to music) about a man named James Paisley who has a child with ED and wanted to raise awareness about ectodermal dysplasia and about NFED (the National Foundation for Ectodermal Dysplasias). To raise money, he set his eyes on completing the Maui Channel Swim, a ten mile swim from Lanai to Maui. In doing so, he managed to raise over twenty nine THOUSAND dollars! How great it that?! Check the video out!

Don't Sweat It Walk in Texas? I Hope So!

So I've been looking for something that I could do to get myself involved with the ED community, specifically in Texas considering that is where I currently reside. To be honest, I don't even really know if there is much of an ED community in this state. I mean, there must be, right? Texas is a pretty big place with a pretty big population, so the statistics should be in my favor. Well, what I find interesting is that there really many ectodermal dysplasia related events here, at least none that I've seen or come across in the past. I mean, there is a golf classic being hosted in Spring, Texas on August, 12th (click here for more information), but what about during Awareness Month? This month, there are Don't Sweat It Walks in Missouri, Ohio, New York, California, and Illinois, but not one in Texas. Maybe it is just the fact that those who are living with ED and are the focus of these events (meaning that they can't sweat) are smart enough not to live in Texas, but considering that this is Awareness Month and there is at least one person with ED in this state, I'd really like to see something happen. Honestly, I'd like to see one of these walks hosted in every state, or even better multiple walks in multiple cities throughout all states, but for now focusing on bringing one of these walks to my city will do. Anyway, basically what I'm trying to get at is that I'm thinking about trying to host one of these walks! I'm an individual who is affected by ectodermal dysplasia and not all of my sweat glands work, and if no one else is going to host a walk in Texas, why not me? I'm not rightfully sure how many people would show up if I did try and pull this off, or if it would even be a possibility this year because of it being such short notice and with my job and all, but I figure it's worth inquiring about at least. So in an effort to do so, I've emailed someone with NFED and I guess we will just see what happens! I'll keep you updated and let you know what she says if she replies tomorrow. For now, keep collecting that change for 30 Days of Change and have a good night!

30 Days of Change

I'm back from Alaska! The trip was truly amazing and for me there were some really profound and moving moments, but I'll write another post about that later when I can accompany it with pictures (I can't find my camera cord!). Today I wanted to fill you guys in on a small fundraiser that NFED is doing. It is called "30 Days of Change," and it's a really simple fundraiser in honor of June which is Ectodermal Dysplasia Awareness Month. Throughout a normal day, everyone collects a few random coins that just jingle around in their pockets after a trip to the grocery store, trip to the gas station, etc. The idea is that you put those couple of coins in a change box every day during the month of June and then mail in the change box as a donation. They even have a simple calendar to follow if you need little reminders or a little push (which you can download here). I figured that with today being the first day of Awareness Month and the first day of this awesome fundraiser, it was the perfect thing to post about and share! For more information about 30 Days of Change and to request a change box from NFED, check out this link. I myself will be participating and I hope you do too! Every penny counts. Also, because of Awareness Month, I'm making a vow to myself and to you guys that I will update my blog every day during the month of June! Wish me luck with that, and remember to save your pennies!