Parents of DMD boys near 15 years of age to discuss issues in our lives

I would love to discuss issues we are facing with our Duchenne boys- especially if your son is near 15 years old.  Thanks, Debi

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Comment by Tammy Henegar on July 7, 2011 at 11:42am

Debi,

 

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.

Comment by Debi McCrea on July 6, 2011 at 4:49pm

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.

Comment by Tammy Henegar on July 6, 2011 at 1:29pm

Debi,

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. 

Comment by Debi McCrea on July 6, 2011 at 12:54pm
Oh, Tony does know a lot about his disease, just not the nitty gritty prognosis.  I am very involved in 2 fundraisers a year for PPMD and he helps also.  We have a friend we do the fundraisers with and their son is 2 years older than Tony so he sees his progression.  Samantha, I would cry tears of happiness if Tony got a kiss, also.
Comment by Tammy Henegar on July 5, 2011 at 1:14pm
Wow... at 15. Does he ask you questions about what is going on at all?  My son is 5, just diagnosed a little over a year ago. He asks me questions already, as to why he has to wear his night splints, why he has to go to this Dr., why he has to go to his PT/OT?  I just give him simple short answers right now, but I know that we will have to sit down sooner then later to talk to him.  It hurts so much in a way not telling him, because feel this is his life, and maybe he should know, but I don't want him to hold back on things either.   I dread the day that we will have to tell him so much though.  I think that we are hoping so far down deep inside of all of us that the day will never come, because there will be a cure soon.  There are a lot of support systems out there, to help you. I wish you the best and stay strong!!!
Comment by Jason G on July 5, 2011 at 8:44am
I don't know... but it is possible in the age of google that a 15 year old knows more than you think about what's happening to him.
Comment by Samantha Dearing on July 4, 2011 at 11:46am

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!

Comment by Debi McCrea on July 3, 2011 at 8:16pm

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.

Debi

Comment by Star Bobatooon on July 3, 2011 at 5:29pm
Hey Debi -  My son Hurricane is 15 years old and there are definitely some different issues cropping up.  I am very open to discussion.

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