I checked out the video...this seems really interesting.
Yea, this is something new that I have never seen and I am very interested in how this all works. He sent me an email with a big write up about it. I am going to attach it here. Anyone that knows anything about this, feel free to comment. I have forwarded this on to my doctor for an opinion as well.
Amy Sienkiewicz said:I checked out the video...this seems really interesting.
I personally am going to take the $4,500 and spend it on a super dooper holiday, because a positive outlook is the best defence our boys have against DMD, and what improves that more than a holiday
I have made our first appointment with Dr. Rhodes and I will keep you all posted. You can look me up of Face book and watch the progress we make. I will be honest in what I find out. I am doing lots and lots of research on this. I have to do fundraiseing to even get there, so that is what I am up to now. My boys are 17 and 13 now, Joshua (17) has really bad contractors in his legs, arms, and hands. If we could get them to relax, and gain more strength he would be on top of the world. I am very hopeful and nervous at the same time, and Joshua wants to try it, so that is what we are going to do. And if Joshua does it Justin (13) has to do it too. I will get with our doctor here first and get some initial test completed so that he can measure the differences or side effects that he may have, or not have.
I am very excited for this and pray and hope it helps.
Just wanted to share my thoughts.
There is another, side, issue here with regard to Dr Rhodes (plus past stem cell experiments) and DMD families. And personally I consider it very important. It is our ability to communicate (or not) within the confines of this site as well as fb.
It appears that some in our community have decided to participate with Dr Rhodes's machine but feel the need to sequester themselves from the rest of us out of fear of backlash. Of course nobody is required to be candid or upfront about anything they choose to do in any aspect of their lives. But it is, in my silly opinion, the RIGHT thing to do to come forward and talk about experiences, good or bad, regarding experimental things that cross our paths. To partake a self experimental treatment and remain voiceless about what happens is sad and perhaps, please forgive me here, a bit selfish.
Seems as though parents go the experimental treatment route in order to seek information to determine if something can help their child. Can't blame anyone really for trying something new. But information is useless unless it is shared.
Personally, if I decided to try something new, and couldn't handle what I read as criticism (please understand nobody who has posted here already is shunning anyone, but is simply stating their opinion to which they are entitled) then I would have to question myself...if I can't handle opinions of others how in the world can I be strong enough to handle the disease eating my child's muscles?