Hello everyone-My name is Gerardine.I live in Ireland.My sister's young son ,aged 21mths,was recently diagnosed with Duchennes.I need help understanding this disease and also informed advice from all…Continue
My sister's son,aged 19months just diagnosed with Duchennes.Also newborn son awaiting tests when they can actually face it themselves.We are all in such low state......especially my sister and her husband.What can i do to help them?Any good books they can read when they able to face it better?
About my family:
I have two sons....both ok and one daughter.Should i have her tested too.....to see if she has the gene as a carrier?
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Welcome to PPMD. I am sure you will find alot of answers and plenty of support here on PPMD. Has your sister been found to be a carrier? If yes, then I believe they would check you first before checking your daughter.
To help your sister, I am not sure what I could tell you that would help... Just be there for her... I vividly remember those first few weeks after my nephew's diagnosis. My sister called me at work and I left within a few days to go see them (she is a 4 hour drive away) There wasn't much I could do to help her... but I think just being there was enough for the moment. Just remember to stand by her and support her... Love them and be there for them. I promise you it will get easier. Just take one day at a time.