What started out as a rally around a fellow Quacker and his family turned into a tremendous out pouring of support for people in need. Through the many generous donations, both small and large, we were able to raise over $800 for people battling OI to be able to go to the National Conference. If you combine these donations along with the auctions our little community was able to generate over $1,200!!!
There isn't enough time and space to thank everyone, from the Gorby family, to scudderfan, to Chip Kelly, to ConnorOSU, to axemen23, the list goes on and on. Instead Julie from OI got the people who we are helping to write a short bio so you can see and hear from them what this has meant.
Julie and Shayla:
You all know me as the local contact for the OI Group here in Oregon, I'm also a full time Administrative Specialist for the Emergency Response Program at the Dept of Environmental Quality (going on my 18th year!), and full time single Mom (my "real" job)! I am a big sports fan (Go Ducks!) and enjoy home ownership (bought my house 5 years ago!) - Both myself & my Daughter, Shayla (14) have OI. Although I don't have a very accurate count, I think it's safe to say that both of us have broken bones about 40 - 50 times, mostly tibia's (lower leg) and femurs (upper leg). I was a patient at Shriners Hospital (they're amazing by the way) and now my daughter is too! Similarly we've both been ‘rodded' (placing metal rods along the big leg bones, tibia's and femurs to act as an internal brace and keep the bones straight) and endured several hours of physical therapy! All of which are worth it, fortunately for us, we both walk and get around pretty good independently.
Shayla is a freshman in high school this year, and is a social butterfly. She likes hanging out with her friends, and although she won't admit it, is a bit of a sports fan herself (ok, she doesn't really have a choice in our house). She's outgoing, caring and if up to her, always on the go. She's involved in an arts program called Caldera, attending a summer camp and various activities throughout the entire year! If it weren't for her small stature (although she's always reminding me she's taller now) and occasional time in a wheelchair after a break, you'd never know she had such a physically limiting disease.
My name is Shanon Ayuyu (Ah-Zu-Zu) and as you may or may not know I have Osteogenesis Imperfecta (OI). I have lived in Portland, Or all twenty two years of my life. My mother, Denise raised my older brother, sister and I practically alone. We would go to our father's house every weekend until he moved to Alabama when I was about thirteen years old. Now we keep in touch by phone and Face Book.
Before I was diagnosed with OI the state threatened to take me from my parents because they thought all of my injuries were result of child neglect. Because there are no other members of my family who suffered from OI none of the doctors thought to look for it. Eventually they figured it out, but they could not figure out what side of the family I could have inherited this "genetic" disease. Yay, I have been blessed to be the first!!
Growing up I can remember broken bone after broken bone, I lost count. Surgery after surgery, twenty two to this date. Cast after cast. My mother always worried about me, but she wanted me to have a "normal" childhood so she always told me, "physically do what you want, because no matter how hard you try, there is always that chance of getting hurt". I believe my family treating me like any other person made me the outgoing caring person I am today.
Currently I am living in my own place, even though my mother is only a few blocks away. I am very independent and have been since I was about five or so. I have had a few jobs in the past, but I have had some medical issues these past few years so I have been unemployed. I have been recovering from surgery on my arm. I am looking forward to getting another job soon so I can achieve my goals. I would really like to go back to school and get a degree, but I will see what happens in the next few months.
I just wanted to take the time to tell everyone a little about myself and thank all of you for all the help you have given myself and the other families attending the OI conference. This is my first year attending and I am looking forward to meeting and getting to know all of you. Again, you don't know how much this means to me that strangers can come together and help someone. I would love to keep in touch with all of you so please feel free to look me up on Face Book.
Amy and Hanna:
Good Morning Quackers!
My name is Amy and my daughter's name is Hanna. She is 1 year 3 months old and keeps me hopping my little mischief maker, you can kinda see it in her eyes in this picture, lol. I am a stay at home mom and Hanna is pretty much my whole world. I recently quit my job to take care of her full time we both have OI and she needs specialized care since she is breakable. Thank you very much for sponsoring Hanna and I for the OI conference we are not sure about the severity of OI that she has and attending the conference will be an excellent opportunity for me to become more informed about OI and the new technology that is out there. Plus, Hanna and I will get to socialize (get out of the house) and meet other people with OI, network. Thank you much and take care, A&H
Lori and Zak:
Lori & Zak live in Clackamas Oregon. Zak is 15, a freshman in high school this year and enjoys playing video games. Lori is a single mom, who spends most of her free time with Zak. Attending the conference is a super opportunity for these two, as Lori can really use some support and Zak will get the opportunity to meet and interact with peers his age, who also have OI. These two really deserve to go and I'm so glad you were all able to help them out!
Lastly, don't forget to check out Miracle Wolf's Blog for the latest on how he is doing, and if you're able to make it to Portland on July 10th (more details to follow) we will be having a get together. I am proud to be associated in some small way to this community and the effort they put in to making this happen. Thank you everyone!!!