Hi, My name is april. We just recently found out that our youngest son Tyler, age 5, has DMD, but our 8 year old didnt get it why does this happen.

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Hi April,
i am sorry to hear about your son. I know that you are devastated. All of us here have been where you are and quite honestly, feel the same way every time we hear of a new diagnosis. Know that you are in a good place for support and answers.
I will give a shot at your question and begin with we don't always know. I am not a carrier but my son has DMD. Why? Could be that I have eggs that are mutated (called genetic mosacisim) and he got a 'bad egg' (no pun intended!). Then there is the chance that you could be a carrier. If you are, there is a 50/50 chance that you would pass on a bad 'x' gene to your affected son and a good 'x' gene to your 8 y/o (you, as a woman have 2 'x' genes to pass on, either of the 2 can go to a boy as they have 1x (yours) and 1y(their fathers); so there is a 50/50 chance they could get either x). Or there is just the random mutation...it just happens. No one knows why.
I will tell you that this diagnosis comes with bad and yes, good. Please know that you are in a good place. There is hope on the horizon..soon we hope, but nothing is soon enough.
Let us know where you live, so that we can help you at the state level.
I am in Louisiana.
I hope I sort of answered your question!
We will add Tyler to our prayers.
Lori and Seph
Hi April,

I am so sorry to hear about your son's diagnosis. I know it is a very hard diagnosis to accept and life as you know it will never be the same again.

Why does it happen to any of us? I have a son who is 4 and was diagnosed almost 2 years ago on Fathers Day. I am not a carrier and it is thought his dmd came about from a spontaneous mutation at conception. He was one of the unlucky ones, and there are many out there.Unfortunately, and I have found this out the hard way, life is not fair! I have actually written a blog on this site about my feelings and told how it has taken a long time to get to this stage where I am not crying EVERY night. I still cry a few times a week, but at least it isn't every night.

April, there are so many people here on this site who will show you so much support. If you need to vent, cry, whinge, ask advice, or just blurt out your feelings and experiences, just go right ahead. No one judges here, no one will laugh at you, everyone is in the same boat. If you need someone to talk to, we are all here.

Sharyn.
Hello April,
I'm sorry to hear about Tyler, but be comforted in knowing you've come to the right place.
I think this link will provide you with some good basic info to start: http://www.ygyh.org/dmd/whatisit.htm Use the menu on the left to get to some more indepth information. And as you have questions as others have said, don't hesitate to ask them...
~Paul
April,

You are in what I like to call the information gathering phase. I think it should be added to the stages (deniel, anger, bargaining etc.) that we all go through in some form after the diagnosis. As you have probably already figured out dmd is confusing. Eventually, you will probably find that you know more about it than some doctors. I just wanted to add that you should not assume that you are not a carrier even if this has never been in your family before. I was found to be a carrier and I too have an older son who is not affected and no family history. About 2/3 of the cases are passed from mother to son, the other 1/3 like Lori mentioned, mosacism. Any daughters have a 50% chance of being carriers if you are found to be a carrier.
Lori Ware said:
Hi April,
i am sorry to hear about your son. I know that you are devastated. All of us here have been where you are and quite honestly, feel the same way every time we hear of a new diagnosis. Know that you are in a good place for support and answers.
I will give a shot at your question and begin with we don't always know. I am not a carrier but my son has DMD. Why? Could be that I have eggs that are mutated (called genetic mosacisim) and he got a 'bad egg' (no pun intended!). Then there is the chance that you could be a carrier. If you are, there is a 50/50 chance that you would pass on a bad 'x' gene to your affected son and a good 'x' gene to your 8 y/o (you, as a woman have 2 'x' genes to pass on, either of the 2 can go to a boy as they have 1x (yours) and 1y(their fathers); so there is a 50/50 chance they could get either x). Or there is just the random mutation...it just happens. No one knows why.
I will tell you that this diagnosis comes with bad and yes, good. Please know that you are in a good place. There is hope on the horizon..soon we hope, but nothing is soon enough.
Let us know where you live, so that we can help you at the state level.
I am in Louisiana.
I hope I sort of answered your question!
We will add Tyler to our prayers.
Lori and Seph

Thank You for your support were so new at this that its hard to not get overwhelmed. Were in Bigfork Montana and trying to find the right pediatrician and support. Its nice to have this site to be able to talk to people that are going through the same thing. Thank you again and we'll talk soon.
My son, almost 5 has just recently had his diagnosis confirmed. All I can do is echo what the others have said about this site. This has been the best place to find support. Know that you are not alone. You'll be added to our prayers as well.
-Celeste
I am sorry that you too have to endure this, but I too found out this year in January that Kelvin has DMD. It has been a crazy year, but I, like all the others on this website, are out to do everything in our power to help ourselves and our sons through this and we are all trying to remain positive that help is within closer reach for our sons, more than it ever has been. On my main page, it is listed what we do for our son. Every child is different, completely different at what they take, how they change, etc. You'll read on here that there are a few great centers in this country that are considered comprehensive care centers. I'd suggest them if you can. Also, on the main page there is a link on the right side of the page linking you to the Old Message Boards. They are a huge wealth of information of many, many years. It is where the information from the old website is. Take care and I'll keep you in my prayers as well. Michelle

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