Hi Deb. first thank you so much for helping me get into the PPMD family.
i hope we will find a heap of friends. i have just had a look at you picks and you have a lovely family. I have an Appel computer and it has all you need for the skype. thank you anyway.
Hi Deb, sorry it took me so long to respond. Always a pleasure to recieve any info or comment from you so you already have my email. I am 36 weeks pregnant and expecting in mid January. So hopefully if all goes well with baby and I, i am planning to attend the conference in Feb. Haven't decided about the ball yet. Deb I have 4 children and my husband does not speak any english, so you can imagine what a load I have. I am not making excuses but that is just my reality. I would love to be more involved, and after baby is born I will strive to give and do more with you and the rest of the PPMD community and the Duchenne foundation. We plan to leave to Lebanon mid year 2010, but I just am not sure about anything anymore, God may have different plans for us so Im taking each day as it comes.
Thank-you for emailing through the info on the GPs, and to the Kewarra family for kindly giving me the name of their son's GP. I am ringing tomorrow to make an appointment.
At the moment, other than through this site, the best email address to contact me on is:
We'll have to organise a catch up soon :-)
Hey Deb! How are you? Hope all is well in your part of the world :-) Well, we are coming back to Australia, woo hoo! We are staying with mum and dad for a bit in Cairns first before we head down to SE Qld, and so I hope you'll be up for a visitor. We land on the 25th April. You'll have to give me a week or two to get a bit of a suntan as I am SO white I almost glow, lol!
We can't wait to get back. I really don't like it here...six months on I have still got no further with Aidan and his steroid induced hypertension. We have got one last appointment at Great Ormond Street the week before we go and so will give it one last shot. If not, I am hoping he will be prescribed beat blockers in Qld so that he can get his steroid dosage increased to an effective level. I can't wait to get him back under Montrose Access, they were brilliant!
Anyway, I look forward to meeting you some time soon, after the jetlag fades and a suntan becomes evident!!
Sorry I never got back to you. We've struggled through some very horrific months since August. Mitch is now on a vent full time and has a feeding tube. Mitch also has trouble with his hands. It does help to stretch daily or 2 times a day, but resting hand splints worn during the night will also help. I feel no matter what we do, eventually the contractures will win out. We can staveit off for a little bit anyway. Mitch did have BiPAP until the aspiration occurred and heis now on 24 hr ventilation. BiPAP wa a nightmare for us because Mitch couldn't assist with placingit and it;'s a tough thing to do when you have to fit it to another person. I'm sure you know all about it! Make sure they check his blood gasses during daytime hours to make sure he's getting enough O2 and also not retaining CO2. Gotta run, but it was nice meeting you!
Deb, I got your message- are you on Facebook?? Wayne posts updates on there as we are still in pre-production. If you'd like, please write to us on our personal e-mail firstname.lastname@example.org and Wayne can send you a sample of the play. He is actually 'tweaking" one of the parts in it because one of the main characters was just re-cast. It is not completed because of these re-writes...
Feel free to contact us Deb.
Your plays sound interesting, Wayne had a 10 minute produced at the Paw-Paw Michigan festival a while back...
Oh my gosh!! I never got your message from October! I'm so sorry Deb. I would love to have you take a look at my husband Wayne's play. He met a young man on the train (BMD), they got to talking and he based the play on their conversations.
Please get back to me and I can get you more information- we started a foundation to raise money and produce the play... so much to say! Write soon!
Yes, Peter and Jan are my parents, although mum briefly told me she met with you recently and so you already know they are now! Mum also mentioned that you may like to use some photos of Aidan for PPA. I'm happy to send any image you like for use in any form to promote dmd and PPA.
Thanks Sharyn, we go so slowly (all of us work and some months seems like the grant applications we write in our sleepless nights are our main success) but there will be opportunities in the near future, I'm hoping. Our advocacy is looking positive and I am hoping for an announcement of govt support soon. Do cyclists have agents? If so, a kind sports agent, has put me in touch with sportpersons in the past, to meet individual childrens' requests for a meet and greet? We consult a Belguim DMD expert often, so we both felt more connected with an aussie riding in the real tour for Belgium - have you contacted Cadel, even though he is again the bridesmaid ? Send email addy and I can follow up if you like? email@example.com will get me.
Thanks for your message. Unfortunately, living in Singapore, I am unable to do a lot for PPA, but please let me know if I can help in ANY way. My husband are fighting to make a difference and are doing all we can to raise both money and awareness, so count me in if you need any help.
Sorry to hear you won't be at either conference! I'd love to see Sydney...so maybe we can make that work. And, yes, please don't sent Helen across our boarder with any products. For some reason the customs agents don't find this as amusing as the rest of us ;-). At least we can touch base every once in a while via the UPPMD phone meetings.