Last Fall I tried to arrange a visit to my son's school from the local MDA. Right after I started working on it, the school lost a child to a motor vehicle accident and things were understandably topsy turvy and I didn't want to push the MDA visit.

Last night my son had two nightmares. He told me about one, but not the other...except to say that "someone" had died in the dream. Apparently he went to school today and told schoolmates over lunch/recess, and the kids told him that he was going to die because of the dream. My son is 7 and in first grade. I don't think the kids he was talking with are familiar with MD (but who knows what their parents might be telling them) so I don't think the discussions were even MD related...I think it was more likely just kids talking.

My son asked his teacher to talk to the older kids in the grade above his who were involved, and when she did...they brought up questions about why my son is slower than they are, and why he has speech delays. Obviously, I need to set up the MDA visit so these kids can get more information.

I'm a little sad today because what should've been "innocent" interaction between kids might wind up opening up more about DMD for my son than he's been aware of up until now. We haven't discussed mortality yet. Do you think seven is old enough, if it comes to that? I try to not give him more than he's ready for...maybe he's more ready than I think...maybe it's just me that isn't ready for him to be ready, I don't know.

Those of you whose sons are more "in the know" about DMD...do you remember how/when they became aware of the issues beyond mobility??

I guess it's one of those "extra hugs" days again...

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I don't have much advice to offer, but I wish Tower wasn't so far from Shakopee because I'd drive up and give you both a big hug! My son is also 7 and he doesn't know the whole mortalilty issues with DMD. But he does understand that everyone has their time and that God had a plan for everyone. If he were to ask me I would tell him the truth that DMD could cause him to have an earlier death, but I will not volunteer that information to him at this age.
Hello Melanie,

I am sorry to read the circumstances you describe. Children can be curious, compassionate and sometimes very insensitive. I don't know if there is any good way to intervene and avoid some difficult questions.

Over the past six years I have gone to my sons' schools and spoken to their classes about DMD. I never had the MDA folks. I have tried to speak about the disorder as it related to the stage my sons were in at that time. When my sons were little and still walking I spoke about muscle weakness and that they had a disorder that made it difficult for them to walk and if bumped, even a little they would fall. I talked about safety, being friends and asked the students for ideas about how they might help the boys. As they got older and began using wheelchairs the discussion would be more focused on how some people need glasses, wheelchairs and other things to help them and that didn't make them any different. The topics were more on inclusion. As my sons have gotten older I've broken up the talks with a bit of raising awareness about DMD and a discussion about how it affects my sons, both at home and school. I have always let the students ask questions after I finished. Most questions have been related to what the boys could and could not do and sometimes they wanted to know more about DMD. Only once did a student ask me the "big question" and I simply told him none of us knows how long we have and that with proper care people who have DMD are able to do many things including go to college and work with computers. This satisfied the class at that time.

My sons are 14 and soon to be 17. They are much more aware of the prognosis, but they don't accept it as being cast in stone. My sons are aware researchers are trying to develop medicines to help those living with DMD. My wife and I have always been very open with our boys and answered their questions to their satisfaction at an age appropriate level. We also try to be as optimistic as possible. If I had to guess I would say once my sons started going to Washington, DC for the Advocacy Conferences was when they learned more about DMD. They have laptops from school and did their own searching.

As for you questions about when to tell a child, I don't think there is a right age, but I think seven is too young. The simple fact is we don't know how long any of us has and with appropriate care those affected by DMD are living much longer. If the questions come up I don't think it is being evasive to say you don't know for sure and you hope "for a long time". Like you, I believe in answering questions honestly (And age appropriately) and I don't think volunteering more information is necessary once the questions are finished. Being a parent isn't easy and days like you described are unneeded reminders.

Best of luck with this situation.

Brian Denger
I think when you try and answer this question for your sons you have to remember 1 thing:

None of us really know when DMD will take our sons, we just know it is when they still have so much living to do.

So when Mitchell asked if DMD was going to kill him (he was 9) I simply said "yes, but we all have to do die of something."

I then went on to remind him his gran gran died of cancer at 91, his poppy will probably die from diabetes, and his gran will die from MS.

I thought I had gotten away with it by leaving it at that, but then a couple of days later he said "so I'll live to 100 right? and then die of DMD"

We have always had a policy that we would not lie, so I said "No, but only a few people live to 100" He then counted back in decades fom 100 (to my horror) and asked at each one if he'd ever be that old. He stopped at 40 when I said we just don't know about that one (which is true, anything could happen between now and then).

He was very quiet for a while, but then he simply said "well, I guess I've got a lot to do between now and 40" and I realised then honesty about the future was the greatest gift we could ever give him. It has given him the ability to set goals for himself based on realistic time frames. We mourn so many things that we'll never see them do, that sometimes we can forget they have dreams and aspirations too. So giving them the truth from the start ensures their plans for the future are achievable.....

A psychologist told me that they only ask the questions they are ready to hear the answers to, but we as parents must remember to keep the reply age appropriate.

If a 7 year old asks if they are going to die they are not after all the gory details they are just starting to appreciate the concept of mortality. A lot of healthy 7 year olds ask the same question, and for our boys it is not a lie to say "not for a long long time" because lets face it, some-one in their 20's is OLD to a 7 y.o.

The psychologist also said that a lot of the boys have a sense of relief when they finally know the truth. Imagine being trapped in a body that was slowly losing the ability to do all the things you love..... and then sitting there thinking this would be you for the next 60 years.... scary thought isn't it?

Take baby steps answer vaguely at first, and get more specific as your son grows, that way you don't make him grow up sooner than he has to, but you can also ensure that if he hears some-one talking about DMD, and the words terminal or life expectancy come up, he already knows that the condition is terminal, but he won't die for AGES......

Unfortunately the down side to raising awareness is the fact that our boys get exposed to the truth sooner, but if you are open and honest, this can be a period of immense growth, with only a hint of sadness.......

Keep your chin up, and know it will all be OK at the end of the day......
Have always been honest with my son from the get go, because knew that someday something like you mentioned about may happen with kids at school or elsewhere getting to him first and saying things to him to upset him. I wanted him to hear it from me and hear the truth explained to him to where he understood and not from the ignorance of others. Kids do not understand dying like we adults do. My son is 23 years old and we both are honest with our feelings, he knows my pain too and I know his and we can talk about DMD and what it means for both of us. He knows I am afraid of losing him to DMD ( also with the understanding that it may not be DMD that takes him from me, or I may even go before him ), and I said it would be very hard to go on without him and he told me that you have to go on and live life to it's fullest.
He is very concerned about everyone else's feelings, very kind and loving, never complains about having DMD, it is harder on me and he is my strength sad to say that he is the one with this illness and he is my strength when I have rough periods along this Duchene Journey. Important thing here for us parents to do, is make sure you have a will in case something happens to you or our spouse and have a plan as who will care for your son if you are called home to heaven first.
Lots of times it is the parent that isn't ready not only on this matter you wrote about, but with sending your son to camp, or getting that first wheelchair.
If you find it hard to talk about this matter with your son, as you know it isn't a easy subject to talk about, maybe get into counseling and talk about this matter with a counseler together.

You are in my thoughts and prayers,
Cheryl
My son is nearly ten and if he were to ask that same question, I would say I don't know because I really don't know. My son may end up in a car accident or something else. We are extremely with our son about his DMD, but I cannot imagine telling him "yes" you will die from this. You know the bus is coming and your son is in the direct line. You know you cannot push him out of the DMD way - but something else may happen. Some incredible treatment to extend lives may come down the lane.
Luckily, my son - who will be 10 in two months - is an outlier to DMD as he still runs, jumps, hops on one leg etc. I know the day will come, if it hasn't already, when he begins to look this up online by himself. He will see exactly what we see - that he doesn't fit the general DMD spectrum at all. We let him know how lucky he is that this disease could be much worse for him. I know we all deal with this disease differently - while we are still all in it together, but your comment just struck me. Curious to know how many other parents out there tell their DMD kids they will die from it?

Julie Gilmore said:
I think when you try and answer this question for your sons you have to remember 1 thing:

None of us really know when DMD will take our sons, we just know it is when they still have so much living to do.

So when Mitchell asked if DMD was going to kill him (he was 9) I simply said "yes, but we all have to do die of something."

I then went on to remind him his gran gran died of cancer at 91, his poppy will probably die from diabetes, and his gran will die from MS.

I thought I had gotten away with it by leaving it at that, but then a couple of days later he said "so I'll live to 100 right? and then die of DMD"

We have always had a policy that we would not lie, so I said "No, but only a few people live to 100" He then counted back in decades fom 100 (to my horror) and asked at each one if he'd ever be that old. He stopped at 40 when I said we just don't know about that one (which is true, anything could happen between now and then).

He was very quiet for a while, but then he simply said "well, I guess I've got a lot to do between now and 40" and I realised then honesty about the future was the greatest gift we could ever give him. It has given him the ability to set goals for himself based on realistic time frames. We mourn so many things that we'll never see them do, that sometimes we can forget they have dreams and aspirations too. So giving them the truth from the start ensures their plans for the future are achievable.....

A psychologist told me that they only ask the questions they are ready to hear the answers to, but we as parents must remember to keep the reply age appropriate.

If a 7 year old asks if they are going to die they are not after all the gory details they are just starting to appreciate the concept of mortality. A lot of healthy 7 year olds ask the same question, and for our boys it is not a lie to say "not for a long long time" because lets face it, some-one in their 20's is OLD to a 7 y.o.

The psychologist also said that a lot of the boys have a sense of relief when they finally know the truth. Imagine being trapped in a body that was slowly losing the ability to do all the things you love..... and then sitting there thinking this would be you for the next 60 years.... scary thought isn't it?

Take baby steps answer vaguely at first, and get more specific as your son grows, that way you don't make him grow up sooner than he has to, but you can also ensure that if he hears some-one talking about DMD, and the words terminal or life expectancy come up, he already knows that the condition is terminal, but he won't die for AGES......

Unfortunately the down side to raising awareness is the fact that our boys get exposed to the truth sooner, but if you are open and honest, this can be a period of immense growth, with only a hint of sadness.......

Keep your chin up, and know it will all be OK at the end of the day......
Exactly! I read a blog once where the mother of an 8 year old DMD boy - took him to a special DMD outing. Prior to going, her son was full of life and enjoying each and every minute. They went to the outing and it was chock full of DMD boys in wheelchairs and ventilators. She told her son that this would be him soon. After the outing, the boys mental state completely changed. He became unhappy and depressed - his personality totally changed. Why would you do this to your kid? Why strip them of the best years of their lives? I just don't understand.

Jennifer Shumsky said:
I don't have much advice to offer, but I wish Tower wasn't so far from Shakopee because I'd drive up and give you both a big hug! My son is also 7 and he doesn't know the whole mortalilty issues with DMD. But he does understand that everyone has their time and that God had a plan for everyone. If he were to ask me I would tell him the truth that DMD could cause him to have an earlier death, but I will not volunteer that information to him at this age.
In "General," I mean when you take a look at the symptoms list for DMD and the age/progression of the disease. Usually diagnosed between ages 4 and 5 - loss of ambulation by age 10. My son doesn't fit that spectrum. He's got some genetic modifier going on or his body is doing some natural exon skipping. My son will be 10 in a month and still runs all over the place - he hops, jumps, runs, rides horses, has very small calves, no cognitive issues at all, swims all the time. He just does it a bit slower than his piers. I have no idea of what's going on, but by the general guidelines for DMD - he doesn't fit the bill. But in reality he does. According to his recent BX, his body is producing less that 1% dystrophin which puts him in the DMD category. After a year of watching, his doctor now treats him as a "special" case knowing he's not the typical DMD presenter. I feel incredibly lucky for my son to be in this situation even though he's got DMD - so it the best in a worst case situation.

Janine said:
irishgirl,
In your post you said your son doesn't fit the general DMD spectrum. I wondered what exactly your thoughts were on what the general dmd spectrum is? I assume you are talking about progression, right?
I know this is months after your initial comment, but I just came across it. Have you had the "MD talk" with your son yet?
As a kid - I was always told that if you had a dream that you died, you would die. So, I totally agree that it was not MD related, but as a protective parent, you worry - and more so now that you have this diagnosis.
You know, we are very honest with our son and he knows he's got DMD. What he doesn't know is that he will be more likely to die from it. In all truth - we DO NOT know exactly how our kids will die or when. An incredible treatment may pop up or a plane may land on your house. Why tell our children that they will die from this when we cannot read the future? You mention that your son is 7 - is he completely mobile at this point? Is the disease progressing quickly in him? My son will be ten in two months and does run more slowly than his piers. But, he is completely self ambulatory. The kids in his class - know he's got MD, I don't know what their parents tell them about it. They have not teased Liam, yet, they cheer him on - "come on Liam you can do it." I have been so totally blessed with a very outgoing and social kid. A kid with an amazing amount of self esteem and confidence. Why take all that away by telling him he will die. My son is also very computer literate and could at any time look up DMD. Hopefully, he would look at the symptoms and realize just how atypical he is. I figure that when our kids are ready to know more information, they will ask. If my son were to ask me point blank if he were going to die from DMD, I can honestly say I don't know!!!

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