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