Our daughter is now 5 and we have a few concerns as to how potentially being a carrier could effect her strength and co ordination.


The problem is the Genetics Council here will not test her as they say she needs to be of an age of consent and understand what she is consenting to before they will test her..I do not agree, but unfortunatly my opinion does not count.


Over the past weeks we have noticed a few significant concerns, she almost cannot pull herself out of the swimming pool, and yesterday, during monkeynastics, she lost co ordination in a crawl activity and has a big rash on her face as she ploughed into the carpet (carpet burns on her head)


Has anyone else had this type of issue with a daughter.



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I am a carrier and have a daugther too, and we are in the same situation as you - they won't do the genetic test, unless she developes symptoms. She is only 6 months, and she seems to be just like any other newborn.
Since we found out I am a carrier, my parents are remembering from my childhood, I wasn't able to walk as fast as my siblings. They thought I was lazy, but perhaps it was my carrier status? I don't have any significant symptoms now.
Hopefully your daughter is not a carrier, in particular not a carrier with symptoms, but in case she is, then I believe her CPK level should be elevated. Won't they even test the CPK level? Especially when you notice these changes?

Thank you for the response, we have had CK levels tested and they are normal, so no genetics as a result.


We also have enroled her for physio once a week, our focus is to give her lots more excercise and see if this improves her core strenght.


Thank you.



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