Starting A Non-profit For Chiari Malformations!

I am asking for your story and perhaps a photo of you as well. You can read about who I am and about why i’ve decided to start this non-profit org. But for the website, I want people to see you- to understand you. I want to raise awareness of this condition and help people see that you’re not “making it up” as so many of you have been told- just like my sister. I want to help. But to help, I have to show people who you are! Please feel free to read about me below, but visit the website and send me an email if you will allow me to put your story on there for people to read. That way they know that what they are donating to is something meaningful and life changing. 

Thank you for your time! 

Aubrey Sapero
Founder/Photographer
www.Hobbies4Humanities.org

So who is "ArtsiMom"?

My name is Aubrey Sapero and I'm located in the Tulsa, Oklahoma area. I'm a full time Office Manager and H.R. rep, mommy to two of the most wonderful little girls, and I am a still-head-over-heals-in-love married woman. I'm diverse. I listen to everything from Bach to Slipknot depending on the day (but mostly “lounge” as of late) and I love playing video games with my husband.  We even have matching Gears of War Cog tattoos. Aha. I love coffee and watching my little girls grow and learn new things each day. I am a dog person but we have a cat at home…I love him anyway. My favorite color is purple, and I am actually pretty scared of open bodies of water; you know- ponds, lakes, oceans, etc. I have to be able to see all the way to the bottom before I’ll willingly go into the     water. I blame “Shark Week”. I do have freckles and, yes, I do love them. Over the years my husband me to realize that the makeup I always wore was only masking my polka-dotty beauty, I’ve since ditched the cosmetics (excluding the eyeliner...) and I am happily exposing my spots for all to enjoy.
 
                                                                                                      You’re welcome. ☺
 
 
I started doing this “Photographer” thing in 2005 just after having our older daughter. Before that I was always up to my eyeballs in Charcoal which still happens to be my favorite artistic medium and when I have the time I do sit down and play with it. Photography just happens to be a bit easier to take with you places and do anywhere... plus it’s much less messy. I did attend college for Visual Communications and Graphic Design; I loved getting to learn about the emotional aspects of art in the marketing world. I now use my education to help the company I work for with any design needs that may come up- but I don’t get to do it nearly as often as I’d like. 
 
 
What makes her different?

I want to raise money for the research of rare and incurable conditions. It’s often said that “everyone is a photographer now”, and it’s true! Everywhere you look there is someone else saying how much they adore the art of photography and how it’s their passion, which I think is awesome! I’m no different. I do love this hobby; I’m not unlike all of the other self-taught “photographers” out there who have profited off of something that we love to do. Well, perhaps just a little bit different. I, of course, could use the money that I would be making by selling my services. When you have kids you can use every extra dime you can get, right?! But one day while driving home from work I started in on a rant, I’m sure I looked insane talking to myself while driving down the highway. I was so frustrated because I’d been offering my services at a stupidly low price so that anyone and everyone would be able to actually afford professional quality photography without paying an arm and a leg. Well, it turns out that most people believe that by paying a ton of money for their photos, they are receiving the best quality there is available, and it’s a status thing- I get that. I also understand why those photographers charge as much as they do- they value their work and their time, as they should, but mainly it’s because they know how much people will pay.

(But that’s a trade secret, so keep it hush-hush.)

That rant helped me to sort out some things in my head- and I came to the conclusion that if I am truly doing this because it is my passion then I should do it to make me happy, not to profit from it. Aside from photography another thing that makes me happy is being able to help others- something that I cannot do financially as much as I’d like to. SO! Why not combine the two? I can contribute something; I can give people my time and talent in exchange for their financial contributions to those who I wish I could help. So that’s why I am here, it’s why I gave you my card or why I asked you to visit this site. I’m asking you to give whatever you can to help those who cannot help themselves. It’s not only a good thing to do, but you will be rewarded for your kindness. If you’re interested in learning more about “Hobbies for Humanities” then please visit the website or contact me! I’m always happy to answer any questions. My life’s philosophy is one of Love and Charity.

This is my mission; and maybe this is why I am here.
My name is Aubrey Sapero and I believe in using our Hobbies For Humanities.

Why Charity?

Why not?! Everyone has things in their lives that they are passionate about, mine happens to be art and helping others. Now- if you were to ask "Why rare and incurable conditions" you'd get a more detailed answer.

...Ok, why rare/incurable conditions?

I'm glad you asked!

I chose to base the non-profit on something that hit kinda close to home for me. My husband has been in pain for years and told by multiple doctors that they don’t know what is wrong with him- it kills me to see him hurting like he is. He’s been prescribed the highest amount of Hydrocodone they can give him as well as Morphine, which he refuses to take. He’s a husband and a daddy- he can’t afford to be a zombie and wants nothing more than to be an active part of our daughters’ lives. Well recently the idea of “MS” (Multiple sclerosis) has been brought forward. As scary as that is, it’s even scarier not really knowing. He has now completely started the testing over again and will continue to move forward until they can completely count out that diagnosis or move forward in treating it.

I also have a sibling with something called Arnold-Chiari Malformation, it’s a condition in which she has herniation of the cerebellum (the lower areas of the brain) through the large opening in the base of the skull into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity within the spinal cord. I’ve watched her deal with the physical pain since she was just a kid, and as she’s grown I’ve seen her disappointment when doctor after doctor told her that they didn’t see anything wrong with her- that she had to be making it up. She is 22 years old and was just diagnosed. While it is a relief to know that she’s had an actual reason for her pain it’s also kind of scary- she just has to wait and watch so that her doctors can see the progression of her symptoms, only then will they move forward in attempting to fix the problem. I’ve found a number of support groups for people like my sister, and they even have shirts! =)

This is actually a newer development, what started me in my mission to help those with rare disorders is (of course) my husband’s condition and a long-time friend of my husband’s family. Her name is Kim, and you can read her story on the “Charity” page of my website. There are SO many people out there who are discouraged daily because they are in pain and don’t know why, or have been told that there is no cure for what they have. And some simply can’t afford the life-saving treatments or medications that they need. I want to start a movement here. I want to start a chain of events that will better mankind, the lives of those in need, and the community we live in.

I want to use what I have been given to help others, and I want to see others doing the same. Maybe what I am doing is crazy; maybe I’m setting myself up for disappointment because the general public just will not support this kind of thing. But maybe this will work. Maybe, with your help, my husband will eventually know why he can’t hold our children for long without being in pain. Maybe my sister, and people like her, will feel supported by those around her if doctors have the funding they need to do the tests needed to see these kinds of issues BEFORE the person goes through YEARS of pain and seclusion. And maybe, just maybe, Kim’s children will have their mother for a very long time thanks to the funds that we can raise to help doctors understand more about how to help her or to help her afford the medication she needs - medications that costs roughly half-a-million dollars a year.
ArtsiMom ArtsiMom
22-25, F
May 11, 2012