Carmela's Page
Profile Information
- About me:
- Hi i'm a 34 year old mother of 2,
My 5yr old has just been diagnoed as havind DMD and i've yet to have my 10mnt old tested as i'm to scared,
I've yet to be tested so still unsure if i'm a carrier or not.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Luca
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- Dublin
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Nice to see more people from ireland on here
Regards jimmy
Duchenne Ireland
Emma here, also from the Action Duchenne Forum. Just thought I would say hi and see how you are doing.
Agree 100% with Sharyn, this place is fantastic too, and I have learnt so much here as well.
Hope the boys are ok. Would love to see some pictures of them, when youget round to it ;o) Take care hun. Here if you need anything.
Love Emma xx
I'm from Action Duchenne, I replied to one of your posts. This place really is a great site, make sure you come over to UK Families up in Groups and join us there. There's a lot of wonderful people on this site, from all over the world and with an absolute wealth of knowledge. They have been my saviours since I found out about James, and their support lets me realise that my thoughts and actions are not those of a mad woman but of a mother grieving, and they will make you realise that it's okay to cry and scream and talk to them about it, about what's on your mind. At the moment, you are in the dark, but you WILL come out of it eventually and realise it's still a lovely sunny day and that there is so much to do with your boys. Make sure you live like it's your last day on earth, the way I see it (if no cure comes up) my son has a lot of living to do in a short time and I can't let him down!
Oh, the other thing is to find out his mutation/deletion/duplication as soon as possible. There is so much in terms of reseach in the pipeline, it's only a matter of time and money until we find a cure. Plus, treatments are mutation/deletion based in many cases, so you need to find out so that you can get Luca on any upcoming trials.
Anyway, hope we become friends. I have made a lot of friends on here and consider quite a few of them as family!
Take care,
Sharyn.
PS I sent you a friend request, can you please accept me?