What do I say?
Its tough explaining what's happening to your child's muscles. Our advice is to explain things when the children start asking.
At first this is likely to be a simple "well your muscles don't work as well as other kids". This follows a realisation that they simply can't keep up with others in playing games at school. Its good to go into school and speak with the teacher and the rest of the class at the primary stage just to explain that the young persons muscles don't work as well as everyone's in the class. This really does help. Some parents have sold Xmas cards at school or organised fundraising events. This also helps to get everyone, including all teachers and other parents, in the school to begin to understand what Duchenne is all about. Also it makes you feel better because now it's out there and is not some terrible secret that you are waiting for people to find out about.
Then children with Duchenne will ask if this is going to get worse and never get better. Again its tough but its better to say "yes that will be the case" Often this can be followed by "will I have to use a wheelchair". "Yes"
A full understanding of the total paralysis that will happen with Duchenne comes a bit later but maybe as early as 9 - 12 years.
Once young men find out that Duchenne will shorten their life and make some things very difficult it is worth considering getting professional counselling for the young people to start to discuss these issues - but only if you think they really need it..
Duchenne is a devastating disease but we must not be ashamed or scared to be open about what is happening to these young people.
Remember that young people have access to the Internet and will definitely begin to search for answers for themselves about Duchenne and why their muscles are not working. Its much better for family members to talk openly about this to the young people when they start asking questions. Young people with Duchenne have reported that they knew for a long time all about Duchenne and what was going to happen but never said anything to their parents because they didn't want to upset them.
Also don't forget to talk to brothers and sisters as they will be emotionally very much affected by their brother's Duchenne.
This link to Brain pop offers a real good US cartoon that you might want to show to the children in your family.