Bradley and I were coming back home after our second trip to get Serial casting done. Out of the blue, Bradley asked me, "Mom, have you bought me a grave yet? I said, "No." Have you bought me a casket?" I said, "No, why do you ask?" He said, "I was just wondering, that's all." It just breaks my heart that these things are going through his mind. I guess he knows that his lifetime will probably be shortened by this disease. I was so stunned by these questions, I am realizing now maybe I should have talked to him more at the moment. I don't want him to dwell on these things and I certainly hope he doesn't think anything will happen soon.

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My son is 8 as of June 2nd and was diagnosed Sept 2007. We are in South Florida and have had to leave the state to find medical support. THe difficulty for WIl is that he feels so isolated with this disease. I work in the school setting as a Speech Pathologist and there are no other known children with MD in the local county school system. How is your son coping? Would you be interested in setting up a pen pal type group for the boys to connect? I feel it would help my son so much if he were able to know someone out there is going through the same things he is going through.

irishgirl said:
Do any of you here have a son who is nearing the age of nine? I can't seem to find anyone who has a child this age whose just been diagnosed with DMD. Our son had few at best symptoms of this horrid disease. He ran slower than his peers. How could we have missed this? Our son never toe walks, does not fall down, runs - not too fast, but does run, jumps, swims, rides horses. He doesn't have trouble with getting up the staircase, although takes two feet per step, and gets up sometimes in gower and sometimes not. Someone please help me to understand why these symptoms NEVER showed up when Liam was four or five or six or even seven. He was diagnosed at eight!!!! I am still new at this game and all I wrote above was Liam before taking any steroids. He is now on Deflazacort, which, in my opinion, beats Prednisone ten to one. While on Prednisone, Liam was so so hyper and ate live a truck. He gained nearly four pounds in a month. Then we switched to Deflazacort and the hyper activity went totally away and his appetite is much more like normal. Liam still does all these things I mentioned before. But the difference is not night and day here. We see little changes in that he is a bit stronger when he wrestles with his dad and he goes up stairs faster. The biggest change would have to be in Liam's attitude. He now wants to try more stuff, it seems that his confidence is boosted. But Liam could do all this stuff before. Please HELP me understand this. I know I sound like a whimp and I am, but Liam is my only child and I love him to pieces, so much it hurts so badly at times. Do I still get him braces? Do I still send him to the best schools I can? I mean what is the point if I keep reading on the internet that DMD kids only live into early 20s? Since our son was diagnosed later, does that mean he will live longer? The best cure for me is to have Liam outlive me. :ast summer I watched both my parent die of cancer within three months of each other and now I get the pleasure of watching my son waste away. Will there be something to help further slow this progression in the next few years? I just don;t know how to handle this. All of our friends who come in contact with Liam just cannot believe he's got MD. Do I still hold the same hopes and dreams for him? When do the steroids stop working, one year, five years, 10 years?????
I have not been on this site in a month or so, but I know it's the best place to come when I am overwhelmed as I am right now!!!!! Any response would help about now!!!
Noreen
Tanya,

We did the "Scream at Muscular Dystrophy" too. It seemed to work well and we got to laughing so hard we had to stop.
. I agree, live for today. Don't look to far ahead because you will lose the beauty that today offers.

Mary

Tanya Fleming said:
All I know is that we cannot predict the future of our boys, so don't live with the thought of 10 years from now, you have to focus on the here and now. One day at a time. I always get upset when I think of the future, that is why we need to focus on the here and now, it will kill you if you don't. I have already lost a Son and have two more to watch go through this. I will handle it for them, I have too, they are always looking to me for the answers and if I don't have them, I tell them I don't and let them know I will find out. I have cried with them and laughed with them, screamed MUSCULARRRRRR DYSTROPHY IS MEANNNNN WITH THEM TOO. Keep your chin up you can do it!!!!!!
Lisa,

I just came across this discussion and my heart goes out to you. It was really hard for me to face realizing I may lose my son earlier than most, although knowing also not to take life for granted for any of my family as we are not promised a long life. But one thing that has helped me the most is knowing we as Christians and those who believe in Jesus Christ, will live forever. God has promised us eternal life through the death of His Son on the cross. In John 11:25-26, it says, Jesus said to her, "I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?" That is why I instead focus on my Son's heart and the importance of teaching him about salvation and praying for that to happen. Also, I am reading through a book entitled "Heaven" by Randy Alcorn. I just ordered the
children's version also so that our family can study it together and get a proper perspective on what life will be like when Jesus returns. I hope this helps you. Thank you so much for sharing your heart with us. One saying someone just told me about is "Be Here Now" and also watching Kung Fu Panda even reminding me of this: Yesterday is gone, tomorrow is the future, today is a gift. I must remember to enjoy each day and every moment possible with my son. I love him beyond words as I know we all love our sons and have this bond like no other. We are blessed.
Kari,
The really great thing is that Bradley has accepted Christ and he knows that he can look forward to an eternity in heaven with Jesus. This is something my husband discussed with him as well when he talked to him later. I don't think he is really afraid of death; but it was hard to hear those questions coming from him that day. My husband told him that any of us could die at any time and only God knows when that will be.
Lisa, That is so awesome. How wonderful but I guess we are still never quite prepared for those questions our kids will ask. Thank you for sharing.
Kari


Lisa Jones said:
Kari,
The really great thing is that Bradley has accepted Christ and he knows that he can look forward to an eternity in heaven with Jesus. This is something my husband discussed with him as well when he talked to him later. I don't think he is really afraid of death; but it was hard to hear those questions coming from him that day. My husband told him that any of us could die at any time and only God knows when that will be.
Hello:
Quick question here...
Are there any boys out there who are 9 and can still RUN??? It is my understanding that when DMD boys are nine, they can still walk, but they just cannot RUN! Is this true?
Yes it is very true! My boys are 9 and 12 and both still run and ride bikes. Calvin who is 12 is still doing really well, he does get tired if we walk for a long time but in general he still seems normal.He does run akwarkly but he does still run. Jared is 9 and he loves to run, he plays soccer and he even seemed to improve this season in soccer even playing offence. They have both been on Deflazacort for 2 years now. Before the deflazacort Calvin was having a lot of trouble with stairs but after hardly any now. We do avoid stairs as much as possible, he has an elevator key at school. They have exon deletion 3-7 which seems to have much milder symtoms.
irishgirl said:
Hello:
Quick question here...
Are there any boys out there who are 9 and can still RUN??? It is my understanding that when DMD boys are nine, they can still walk, but they just cannot RUN! Is this true?

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