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We go to Dr. Wong as well. She does seem to be amazing to us as well. We checked on a few other Dr.'s as well, but just felt that she was the most passionate about this. We have an appt coming up the end of this month with her in fact. Any advice that you have to offer us, would be so much appreciated. We live in Curtice Ohio, just east of Toledo, but it well worth the travel down to see her.
Yes, I agree. We will never give up our hope either. If you don't mind me asking.. what trials have you been involved in, and how does Tony handle them when he does participate in one?
We were contacted by Columbus for one, but opted not to participate. I want to help in all we can, but then there is the other side of us that doesn't necessarily want Braedan to go through anything that he does not have to go through as well.
Tammy, You did not offend me. I did not give much information in my first post, so how were you to know.
I tell Tony whatever he asks, but I also say that we will never, ever give up HOPE! A cure could happen in 5 minutes. We try any drug trial that comes along and take anything that the doctor thinks will help. We are very lucky to live in Cincinnati where Children's Hospital is and Dr. Brenda Wong practices. She is an amazing person who is working nonstop to try new things for our DMD boys.
I hope I didn't offend you. If so, I really did not mean to at all. I guess that this is so hard to grasp ourselves, let a lone explain the right way to our boys.
Hey guys. My son Justin is 15yrs old. He turned 15 this past April. I would love to join in on any discussions.
We havent really told Justin anything. We discuss it as it comes up. I just dont want to dampen his outlook on what he wants to do in the future. All too soon I think he will realize that some things just wont be possible for him. Justin doesnt have many friends either. He has two who come to the house(theirs arent accessible). They are really good about coming over and hanging out with him and playing video games. He texts people, but thats about it for his social life. The two friends he does have, I have known their parents since childhood, so they have always been around Justin. He did briefly have a girlfriend, and even got his first kiss. I know its starnge, but I actually cried out of happiness for him! Its just something that we wondered if it would ever happen for him. Ok. enough rambling!
I am wondering how much to tell him about his disease. He is smart, but hasn't looked up the disease on-line, as far as I know. He gets sad, because he doesn't have friends, etc.
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