9 months ago I learned a new word - Duchenne. Since then I have learned many new words, and I am starting to become an expert in a disease, I didn't know existed until this very day.


My son is 4½ years old, and we started to see doctors when he was about 1½ year, because he walked on his toes. We have seen several doctors, but no-one suspected anything serious. Then just by coincidence i read about duchenne - in an old magazine in a waiting room. I read about two brothers with duchenne, and immidiately recognized the sympthoms. Test later showed i am a carrier too, at that time i was 7 months pregnant - it was a girl, thank god.


These past months have been a rollercoaster ride, which i couldn't imagine. No-one can, except for those who have experienced this. 

I have been angry - I still am, but i don't know where to adress this anger.

I have been sad ever since, and this dark feeling of sorrow is overwhelming and almost always present. I can't look into my sons beautyful blue eyes without thinking about Duchenne, and what his life will be like. I don't know if things will be like this always - I hope not, because Duchenne is not what my son IS, it is something he HAS. And he is the love of my life - along with his little sister.


Soon after i learned about my son diagnosis, i made a promise - I will fight with all my strength that my son gets as normal a life as possible, and focus on the things he can, not what he cannot do.


There is a saying: You never know how strong you are, until being strong is the only choice you have. This pretty much expresses where I am right now.

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Comment by Andrea Cleary on March 16, 2011 at 3:50am

Dear Jackline,

How are you hanging in there?

I only recently have begun talking with a therapist about my anger (and guilt) , but it has ravaged for 4 years now and has damaged some relationships, and things at work. Please don't let it take you over for as long as I did. Like you said, your son deserves all the strength you can give him.


Take care,


Comment by Andrew Kerr on March 9, 2011 at 12:52am

Hayden was about the same age as your son when we first started seeing issues.  He wasn't walking yet, not even very close to it.  They thought it was an issue with his one foot being a little crooked.  Around 26 months he started walking and we thought all was well.  At least until his cousin was diagnosed, and we learned his mother (my wife's sister) was a carrier.  Cameron was only about 3.5 months old when he was diagnosed, Hayden was 3.


There's always moments of anger, grief, and everything else.  We're still in the early stages, but it has gotten a bit easier.  The good days far outnumber the bad days. 

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