Sunday, March 15, 2009
A Whole New World
Hey Everyone,I'm so sorry I haven't updated in a long time. It's been pretty busy latley with school and riding horses. I still have been having improvments. We also just did a follow up on Channel 4. They wanted to do a head story because Oboma waved the law that restricted stemcell research:) some of the improvments I've had is now I am actually DRIVING:) I got my permit 3 days after my birthday. TALK ABOUT A DREAM COME TRUE! my vision has improved from 20/200 to 20/80 in my right eye and in my left i went from very little light perseption to 20/2100 which is pretty good. When we went to the Dr to see if i could drive I read the very top row of the reading chart about 3 feet away from my face. Mom started crying and I'll admit I got pretty teary eyed to. Driving has been going well we've just been driving arround the neighborhood and stuff but i'm able to see the signs and lines stuff like that. It's a little nerve racking for mom and dad when they let me drive:) Another cool thing is that is happening is mom and I are going to Florida to speak at a medical converence about stem cells and they want mom and i to talk. It should be fun. Well I will try to update more when I see more improvments and such. BYE:)
Subscribe to:
Post Comments (Atom)
6 comments:
hello macie!!! my name is derek goodwin and i have a daughter named skyler with your same condition. I'm in the military and of course they will not pay for me to go to china to have this done. Can i please ask you some questions about the trip and procedure? please please contact me at drg46and2@yahoo.com thanks
HEALTH AND SUCCESS FOR ALL OF US. I HAVE A DAUGHTER OF 11 MONTHS WITH HIPOPLASIA OF the OPTICAL NERVE. WE ARE IN CAMPAIGN - I HAVE DIFFICULTY WITH MY CONTACT IN the BEIKE - LUIS FERNANDEZ - CATHEDRAL POSSIVEL WOULD LIKE THAT ME ENVIESSE IT OF YOU. I HAVE URGENCY WITH THE TREATMENT. MINE AND - MAIL IS LUCIFALVES@HOTMAIL.COM. HERE IN BRAZIL SHE WILL BE THE FIRST CHILD TO GO TO CHINESE FOR THE TREATMENT. HE IS DIFĂCIL.TENHO TWO URGENT QUESTIONAMENTOS. WHICH THE NAME AND ADDRESS OF the HOSPITALS OF the VEIKE IN JUNAN AND QUINGDAO? I WILL BE VERY GRATEFUL
Hi Macie, I'm so happy that you are doing so well! My daughter is 2 yrs old and has ONH. I'm glad you posted your story as an inspiration to others. If you are answering specific questions,I'd love to ask you more about your experience growing up with ONH and the treatment you received in China. Let me know and I'll give you my email address. Thanks!
Hello Macie, you are in inspiration for all of us. Thanks a lot for sharing your story with the world. My 5 month old nephew was diagnosed with ONH. Doctors told us he totally blind. We are very interested in taking him to China, but we are not sure about the risks we are taking. His doctor told us it was not a good idea...."that is just baloney" she said. We are a little afraid. Please contact me...I have a few questions. My e-mail is espert1@yahoo.com
Hello,
I am Manuela's mother, she will go for Beike, she has ONH. Do we specify knowledge how Dakota is, there were improvements after the treatment?
Manuela will be the first Brazilian child treating itself with ONH. Do we wait anciosos for answers?
My and - mail: lucifalves@hotmail.com
Luciana Alves
Manuela's mother
Hi Macie, I had the pleasure of meeting your Mom in Manchester, England in August, she was at the Awareness day with Cody's parents. She told us all about you and how she never give up looking for someone to listen to her regarding your ONH. You really are an inspiration!! My nephew Dylan is in China at the moment, he has SOD and had his first Stem Cell treatment yesterday. So we are all here hoping and praying that he too has a sucsess story like yours. My best wishes to you for the future.
Love Julie McMahon (Liverpool, England) xx
Post a Comment