Dont know much about dmd families in darwin.....i am blessed with a son 8yrs this month on 11th..and a sweet daughter 4 yrs. Still waiting for the blood test reports for the underlying cause of dmd ....hoping for something good in future....ready to help our community.
It's funny because when I see Doug's eyes, they are similar to my family, so when I see his photos, it's like I know him already, it's like looking at a cousin.
I really do think we are on the verge, turning the tide on this Duchenne, but I also feel deep in my gut that my Simon will miss the boat too, despite the advances and exon skipping. His efforts will benefit the next generation, and that's okay. To know how all the families have felt "so close" since the gene was identified 25 years ago, is overwhelming to me this week. And why should I expect any different?
Let's just love all our children (and grand kids) as best and as much as we can. Spoil little Hunter rotten!
Hi Deb, Thx for email. I have now added more pics! I have difficulty sometimes getting on line... probably to do with excepting Noah's diagnosis. Silly I know but at times I think how can this be happening to my beautful Angel. We are in the process also of having Gracie diagnosed with some syndrome. Whilst all her genetic tests are clear, we are told she definitely has something. Again hard to take especially after Noah's diagnosis... however I have the most amazing kids and you learn very quickly to take each day as it comes. Noah started school this year, Roo started 4 yr old kinder and Gracie just started in day care so I get sometime to myself... WOOHOO!!!!
Hi Tina & Darren, The cocktail function is the only social event I of which I'm aware. Hook up with other delegates to continue networking after the conference perhaps? The Mardi Gras is Saturday night I believe, but maybe just check out what's on in Sydney
Locals should have more information - perhaps they will comment here?
Looking forward to meeting you...just look for the guy in drag at the conference - that's me...except I really am a woman! love Deb
just letting you know that i have sent an email to helen. fingers X .
i have had so many people that are now chatting to us its great. i did not tell you . i am a writher. i have writen some pomes and my own book about me and i am in the middle of doing a journey of tyran 's life. i am also in the midlel of trying to get a set of 5 book's about DMD out into the shops but i need $4000 just to get them published . book's 1 to 4 are all about a little boy called Tim and he has DMD and he has a friend called Rex he is the X genne bear and he helps tim to understand DMD better. one day i will show you then.
That's great Lina - I will get to meet you. But sad you are going back to Lebanon. you can tell me about it at the conference? Look, it is not your time to help - you must put your family first. All mine are grown up and do not want to hang out with their mother any more, so it is easier for me to do stuff. No worries about any of that.
All the best for the miracle of birth and I hope it goes smoothly for you both. love Deb