how do we tell our 7yr old boy he has muscular dystrophy?

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User - posted on 01/21/2011

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My son was 7 when he was diagnosed and when it finally sunk in what Duchennes really was, his dad and I were devestated. BUT, how could I tell my son "you will eventually lose the ability to walk and die at an early age'? I just couldn't bring myself to say much. We explained that what was going on with his muscles, but we left out a lot of details. As time went by, and different situations arose, we would talk about it, but NEVER did I say "you will never walk again." My son lives with the hope of being able to walk again someday and as his mother, his hope is my hope. I won't squash that one bit. In my mind, he will walk again....Denial? Of course. But who cares?? We focus on each day we are given and try to find the joy in every moment. Yes, there are struggles obviously, but my son brings us joy that no other can bring.
Share what you need to share with your son, but leave out the unnecessary information that by knowing, won't change a damn thing. Live for the moment and deal with each change as they come and LOVE EVERY MOMENT!

Janelle - posted on 01/23/2009

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I think the only way is honestly! There are plenty of children's books out there to help explain some of the things he may be going through and will be going through. I will gladly share some title if you'd like.

Lorraine - posted on 07/29/2010

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Yes be honest as Janelle and Jennifer said. I found out when my son was 6 and we told him the truth, we all learnt about muscular distrophy together as a family, this became easier for us to tell our second son

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Claire - posted on 04/06/2014

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I totally agree with everything you have said, I am about to tell my son who is 9 , that his legs will get weaker and he will need to start using his wheelchair, it has been sat in the garage for 6 months, Lewis is a fighter, and we will not dash his hopes or our own , we live every day !!!!!

Danielle - posted on 06/12/2013

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We told our son bits and pieces. He was 4 when we found out and i was the only one that had ever heard of this so i had to explain to the family what was going on and what to expect. As my son started noticing he couldnt run or jump like the other kids could he started saying mama whats wrong with me. I told him that he was specail that his legs were just different than the other kids. That worked til he started to wear braces then the kids were asking him what was wrong so there is a video on youtube that is a cartoon that explains the changes they are going through after watching that he was fine.

Kerrilynn M - posted on 09/22/2012

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My step son was 51/2 when we found out and i remember being at the dinner table crying and he said daddy why is Kerri crying again and i said just sad Trevor because the Dr. said you have MD and your muscles are weak , he flexed his muscles and said no ther not i got muscles and we all just laughed. Its a hard thing to tell a kid but one day at a time is how we take it with lots of love and patients.

Tamara - posted on 11/19/2011

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My son was 3 when we found out, I have always told him, and I tell him a little more information the older he gets. One day at a time!

Kimberly - posted on 11/17/2011

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For me I have a 8 year old with Duchenne's. We have always been up front and honest with him over all questions. We believed in treating him like we would anyone else and have held nothing back that he has wanted to know. I believe it has made him more open about it with others and he just tells people why he is different. I can say my way has been the best but for our family it was. We are a strong family that way and honestly talk about everything together. I have four children all together and we have learned to grow together as a family with DMD. My boy teachs me more things than I will ever teach him and he is just an amazing, bright, funny great kid to be around. I'm so proud of who he is and who he is becoming. We have our good days and bad days but one thing is for sure we get through them together as a family. I will pray that the right answer comes to you for your family and that God holds your hands through it all. God bless.

Kayla - posted on 08/07/2011

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I'm in the same Predicament, My son turns 8 next week and we haven't told him every detail about his illness, we've been taking each day as they come and explain it as we go. 2 days ago we were asked to participate in a treatment trial for Exon Skipping in NSW.. This will definitely raise alot more questions from him if we go with it.

Nicole - posted on 04/14/2010

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I used the internet a few years ago when my son was going threw puberty so he could see the changes for one, and I never tell my son what's going to happen to him next untill we reach that point But I did find a website that showed different stages of the DMD and how it effects the body and my son said it helped him understand it better...but yeah honesty is the best.

Julie - posted on 10/22/2009

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Iremember being in the same predicament. I didn't know what to say but I kinda had no choice to explain it for I had three other curious children at home; "why does Tim have to crawl? etc...I also got him some books on kids with disabilities.

Jennifer - posted on 06/19/2009

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Janelle is right, just be honest. My son was diagnosed when he was only a year and a half old so he has always known the name of his condition. As he got older I always told him the truth in an age appropriate way. I never wanted him to look back at how I handled it and think that I witheld some of the truth. Its his body and while it is difficult he deserves to know the truth. I hope that some of this helps, and remember that there are other parents who are in the same situation and we definately can help each other out!

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