To anyone who has not seen or heard of the dvd Darius Goes West should order it and watch it. Its a great movie that shows an inside look into Duchenne. This year they need to sell a million copies so if you have not ordered it yet please do! Go to www.dariusgoeswest.org

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I think that carpet bombing the schools with this movie is a bad idea. I want to control the rate and complexity of information that my children receive on Duchenne, along with our doctors. Not learn more than they need to know at the time from a movie they see at school, or from a friend who's seen it at school, or a half-informed teacher that puts it on. It also changes the environment your child operates in when all their peers know the progression and outcome of the disease. I don't see that as a good thing. I have a hard enough time dealing with this information, and I'm an adult.

If you're the only family with MD in the district, and you want it shown - fantastic. It should be your decision, though. To send it out to every school in the country as a fundraiser, is in my opinion, very presumptuous.

I asked my schools specifically NOT to show this movie in their classes.
I am on the same page as Jessica and Gary Fluaitt...this is what I mean about it being a hush hush disease....no one wants to share about it with the public....I have my copy and have viewed it with friends and they had their eyes opened...unless you have viewed it, it is unfair to judge what they are doing by sharing it in the schools.....it is great for our sons peers to see what this devastating disease is about thus allowing them not to sympathize with our sons but, to empathize with them and better understand the disease...why not start with their peers, because they are the ones growing up with our boys and this may be the chance of a lifetime to eductae the public thru the generation growing up with our boys.....the earlier generations haven't done so well with eductaing the public as no one still in 2009 knows that MD is even out there effecting many families!

Even with my "Scents for Duchenne" Fundraiser my son and I started back on Jan. 25 of this year, yes the e-mails were frequent at first and I received some not so nice e-mails, but the encouraging e-mails encouraged me to continue to try and raise whatever funds we can thru our fundraiser. We have been welcomed with open arms when we raised money for Breast Cancer, Habitat for Humanity and Animal Shelters in our local community...never heard anything negative like i heard here on PPMD!

So, it goes to show that not everyone agrees with what others are doing to help raise the needed funds for my son and yours, or to help spread awareness. Thought to ponder my son is 23 years old Darius I think is 19 or 20, he has already lost a brother to DMD, making his efforts along with his crew that much more personel, what we are doing will probably not benefit my son or Darius, but it will help other families with younger boys and even families that have yet learned of DMD striking their family!
The way to help our boys is not to protect them from the disease they have....you empower them when they know the truth. Yes, it is a very hard thing to except, I still do my crying, I still do my pleading with God, I still try and do what I can to raise funds that may never help my son beat his Duchenne battle.
The boys that I know who live here in Maine along with my son are the strong ones, they know it all and they have accepted it better then we parents do. There is one boy that his mom kept things from him till he was about 12, don't know how she did it ( with clinic visits and all ), she called me one day and asked how old Adam was when I told him....I said I never actually told him, sat right down and told him, he learned as we went along this Duchenne Journey from clinic visits and what we read in the Quest Magazine! He never really asked questions. Well, she told her son, of course he was getting close to the awkard age of becoming a teenager soon, probably not a good time to tell him what was wrong with him at this age, well, he treats his mom so bad now, he is angry at her for pretty much lying to him he said and keeping the truth from him. Yes, not all boys will do as this boy did.
We can't protect our sons from Duchenne by not talking about it or allowing them to know what this disease does, our sons understand more than you think they do....and when they see us as adults and their parents struggling with the terms of them having this terrible disease then they won't talk about it to protect us....when you think you are protecting them in fact they are protecting you!

It is not a video to falsely teach anyone about Duchenne MD it is a very good documentary to help show our family and friends what Duchenne does to a family as they don't comprehend it even though a family members son has Duchenne and the obstacles that are out there...such as bathrooms that our boys can't use! Stories such as Darius's have to be told as it is our story too.....I commend the crew that travel with him and how they help Darius with his daily needs, you all know Darius isn't a small guy! I wish my son had that kind of support from guy friends!

Don't shut the door too fast on people that are trying to change how others view DMD and other forms of MD, to educate them, to share with them our stories and thru allowing more to gather around us and support our cause a cause we all are living daily!!!!

Blessings!
Cheryl
This is when you and your Dr.'s need to do your part when a school in your area shows the movie to be there as a speaker to clarify any misunderstandings and to answer any questions. We as parents can't control everything our children hear whether they have Duchenne or not.....I feel many parents because they couldn't control their son having Duchenne want to try and control everything else. It isn't a good feeling as a parent that we can't take care of our sons big boo boo....we can't put a band aid on it and kiss it and make it better or better yet go away....not a good feeling at all having your hands tied and not being able to do anything.....all we can do is educate ourselves, educate the public, and be honest with ourselves and our sons....they know more than you think, of course at their age level and explained at their age level, they don't know it as we adults do. You don't think they don't over hear parents talking on the phone to family and friends, the Dr.'s, or the hours you spend on the computer educating yourself and then discussing it with your spouse or partner and others.
But,we all are entitled to our own thoughts on things and should be respected by all. Read 2 replies under social issues I think it was, where 2 moms were control freaks tryng to protect their kids from everything from food to toys, to clothing to everything that is out there that could possibly hurt their children.....they woke up one day and now they are living their lives to the fullest.....sometimes working so hard to protect our children from all the lurking things out there that may hurt them and may not even do anything to them takesalot of your emotional and physical time....time that could be used in enjoying them and allowing them to be just children while they are children. Life is unfair at times we all know this here on PPMD it is very unfair.
This is the first I have heard any negative about what Darius and his crew are doing, I have heard nothing but positive, but Keith you are entitled to your feelings on this video going into the schools.
Just like the fundraiser Adam and I started "Scents for Duchenne" we heard some negative and yet we heard many positive.....we have been raising funds since Adam was dx back in 1990 while living in SC, have organized many fundraisers on our own throughout this time, even helped with MDA organized and supported fundraisers, do the local broadcast of the telethon each year, Adam as represented MDA twice as a state Poster Child in SC and here in Maine....even though Adam is 23 yrs. old we still represent Maine in our surrounding communities as not every family wants to be this involved which is their choice, we choose to be involved still, Adam enjoys doing so as he knows it may help him and others we do realize it may be too late for him, but we keep trying different ways to raise funds.
We all deal with it differently, but at the same time we deal with it in alot of the same ways! We all aren't that different!
Cheryl Markey said:
I am on the same page as Jessica and Gary Fluaitt...this is what I mean about it being a hush hush disease....no one wants to share about it with the public....I have my copy and have viewed it with friends and they had their eyes opened...unless you have viewed it, it is unfair to judge what they are doing by sharing it in the schools.....it is great for our sons peers to see what this devastating disease is about thus allowing them not to sympathize with our sons but, to empathize with them and better understand the disease...why not start with their peers, because they are the ones growing up with our boys and this may be the chance of a lifetime to eductae the public thru the generation growing up with our boys.....the earlier generations haven't done so well with eductaing the public as no one still in 2009 knows that MD is even out there effecting many families!

Even with my "Scents for Duchenne" Fundraiser my son and I started back on Jan. 25 of this year, yes the e-mails were frequent at first and I received some not so nice e-mails, but the encouraging e-mails encouraged me to continue to try and raise whatever funds we can thru our fundraiser. We have been welcomed with open arms when we raised money for Breast Cancer, Habitat for Humanity and Animal Shelters in our local community...never heard anything negative like i heard here on PPMD!

So, it goes to show that not everyone agrees with what others are doing to help raise the needed funds for my son and yours, or to help spread awareness. Thought to ponder my son is 23 years old Darius I think is 19 or 20, he has already lost a brother to DMD, making his efforts along with his crew that much more personel, what we are doing will probably not benefit my son or Darius, but it will help other families with younger boys and even families that have yet learned of DMD striking their family!
The way to help our boys is not to protect them from the disease they have....you empower them when they know the truth. Yes, it is a very hard thing to except, I still do my crying, I still do my pleading with God, I still try and do what I can to raise funds that may never help my son beat his Duchenne battle.
The boys that I know who live here in Maine along with my son are the strong ones, they know it all and they have accepted it better then we parents do. There is one boy that his mom kept things from him till he was about 12, don't know how she did it ( with clinic visits and all ), she called me one day and asked how old Adam was when I told him....I said I never actually told him, sat right down and told him, he learned as we went along this Duchenne Journey from clinic visits and what we read in the Quest Magazine! He never really asked questions. Well, she told her son, of course he was getting close to the awkard age of becoming a teenager soon, probably not a good time to tell him what was wrong with him at this age, well, he treats his mom so bad now, he is angry at her for pretty much lying to him he said and keeping the truth from him. Yes, not all boys will do as this boy did.
We can't protect our sons from Duchenne by not talking about it or allowing them to know what this disease does, our sons understand more than you think they do....and when they see us as adults and their parents struggling with the terms of them having this terrible disease then they won't talk about it to protect us....when you think you are protecting them in fact they are protecting you!

It is not a video to falsely teach anyone about Duchenne MD it is a very good documentary to help show our family and friends what Duchenne does to a family as they don't comprehend it even though a family members son has Duchenne and the obstacles that are out there...such as bathrooms that our boys can't use! Stories such as Darius's have to be told as it is our story too.....I commend the crew that travel with him and how they help Darius with his daily needs, you all know Darius isn't a small guy! I wish my son had that kind of support from guy friends!

Don't shut the door too fast on people that are trying to change how others view DMD and other forms of MD, to educate them, to share with them our stories and thru allowing more to gather around us and support our cause a cause we all are living daily!!!!

Blessings!
Cheryl
Additionally, what I love about DGW (and I am the only DMD family in our community and I AM bringing DGW here next mth...YEAH!!) is that is shows that our boys may look different, but they still ARE just one of the boys and can be treated as such..not mocked, or an oddity b/c of a chair, but real humans. It is an awesome movie. I encourage everyone who has not seen it to see it before passing judgement.....
Lori
Does anybody know if there is a plan to show DGW at the PPMD conference this year? Especially since it is close to where Darius is from, being in Atlanta ....
Just to be clear, I have no issue at all with the movie, or anyone's desire to show it - at their school, or anywhere else. I think the movie is fantastic. I had a screening scheduled myself. My sole issue is the strategy of trying to force this level of information on school age children by sending it to every middle and high school in the country.

When my son's ready for information on how it will degeneratively effect his mobility and shorten his lifespan, I'll give it to him. I don't want it coming from a movie, and I don't want it coming from school. I suspect those with older sons had the opportunity to discuss your son's condition with him on your timeline - not someone else's - right? That's my only issue here.
Keith, I agree with you there, and my 7y/o WILL NOT be seeing the movie!!!

Keith said:
Just to be clear, I have no issue at all with the movie, or anyone's desire to show it - at their school, or anywhere else. I think the movie is fantastic. I had a screening scheduled myself. My sole issue is the strategy of trying to force this level of information on school age children by sending it to every middle and high school in the country.

When my son's ready for information on how it will degeneratively effect his mobility and shorten his lifespan, I'll give it to him. I don't want it coming from a movie, and I don't want it coming from school. I suspect those with older sons had the opportunity to discuss your son's condition with him on your timeline - not someone else's - right? That's my only issue here.
You know there is never really a good time to tell our boys what Duchenne is and why they have it, and what it means to them and their life....there is no set age that is perfect to tell them.....all I do know is all the boys and their families that we know personnelly have just been honest with their sons from the get go....and these boys have all turned out to be awesome young men, have their faith in God and have done nothing but, teach us parents what life is all about. Like in the mean time what have you been telling your sons when you go to the clinic visits? Do, they even know why they are being brought there to see the Dr.'s, when they aren't sick ( per say not with a cold, etc. )? I don't ever remember per say sitting down with Adam and having this huge emotional conversation with him re: Duchenne, he just learned as we went about this Journey. I don't ever remember wondering what I was going to tell him and when I was going to tell him what Duchenne means to him by means of saying to him hey, son come here mom has to explain something to you and sit down with him and explain Duchenne ( like a parents dread the talk someday about the birds and the bees ). And Adam is a very emotional stable young man now and he can openly and candiately talk about Duchenne and what it means.
Sometimes we parents think we have it all figured out when we don't, just because you wait to tell them when you feel it is feasibly to where they will understand, it may just be in actuality when you feel it is the right time for you to be able to do it ( talking to your sons about Duchenne ) and not just for them to understand.
We all want to protect our sons from this horrible disease, but we can't, really we can't!

Lori Ware said:
Keith, I agree with you there, and my 7y/o WILL NOT be seeing the movie!!!

Keith said:
Just to be clear, I have no issue at all with the movie, or anyone's desire to show it - at their school, or anywhere else. I think the movie is fantastic. I had a screening scheduled myself. My sole issue is the strategy of trying to force this level of information on school age children by sending it to every middle and high school in the country.

When my son's ready for information on how it will degeneratively effect his mobility and shorten his lifespan, I'll give it to him. I don't want it coming from a movie, and I don't want it coming from school. I suspect those with older sons had the opportunity to discuss your son's condition with him on your timeline - not someone else's - right? That's my only issue here.
I think we're actually on the same page, Cheryl.

My son knows he has MD, and we're learning as we progress on the "journey". Like how he learned this year that he couldn't play baseball any more because he's too weak. Or that he needs a step stool to get on the bus now because he can't climb up. Or that some kids with MD need wheelchairs. Learning, and being truthful as we go, is what feels right to me, and how our doctors have suggested we proceed. I don't think there's a need to jump to the end of the story prematurely - which is what I feel distributing this movie to schools can promote. Hey, I personally have hope and pray every day that we don't even know what the end of the story is for younger boys.

Good talking with you about this today, and I truly appreciate your insight on this board, on all topics, as a parent of an older boy.
I don't think anyone really knows when or what to explain to our boys about Duchenne but its hard for them to not learn about it with all the doctor visits and then possible studies. I have been pretty honest with my son I didn't know if I wanted my son to learn about the life expectancy but we were watching the special about Darius on TV before Darius goes west was available for purchase and they metioned Darius's brother passing away at 19 and about life expectancy and my son looked at me and asked if that was going to happen to him.I told him that it is a possibility but that they are doing alot of research and we don't know what the future holds and he accepted that. I don't think it hurts them to know what they will be facing in the future. So many people have no idea what DMD is and I think that is very sad it should be talked about then maybe we could get closer to a cure.This documentary lets people know about the truth of this disease and about the places in America that are not handicap accesible because that is awful to go somewhere and then realize your son can't go inside.Doctors don't tell us when or how much to tell our boys so its really left up to us but I think they deserve to know so they can enjoy life to its fullest. God Bless,Jessica
Jessica - just curious what age your son was when he asked that question about life expectancy.
He was 10 almost 11

Keith said:
Jessica - just curious what age your son was when he asked that question about life expectancy.

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