thanks for getting back to me, how are you doing today, i have to ask does it snow when in the fall and winter there. i live in usa all the way in the seattle area. i am very bless and able to go to the ymca five days week, tranning very hard for the run for our son half marathon. i live with my who happens to be my cargiver. i am very indepent that is very important to me, my hips rotae out, and had 14 operation i also have a learing dislabliy anxity and desspresson,but that does not slow me down. as long as i can still get up and move this body i will do everything i can to help these boys. kimmy
OMG , i did on think tina harris was so well known ... ok the photo of me on face book is nothing like my PPMD photo. on face book i am on my own and i have my hair strath and its brown i have a green top on... i am friends with deb ... what is your email address and i will try to find you agen..... don't stress we will find each outer ..... chat to you on the face book soon
Just looking at your photos today and they are good. Before we found out about Tyran having DMD we had a Photo biz called Super Flash.... and we did a hep of weddings but that was some time ago like 7 years ago.
I am going to join the croup Digital for Duchenne. With out photos of our boys we are truly lost... I hope you liked the photos of Tyran and Darren at Airs Rock l up dated not long ago.
Tyran is just at the end of his time walking. He just cannot do it any more. There is not many PPMD Family's that live close to us hear on the Central Coast. There are 4 family's ( including your family ) up your way but thats as far as they go. I am so happy to now find a way to chat to outer mums just like me.
Thank you also for joining our Starlight Wish group.
She asleep, she had a good one. OMG cant believe that she 18 next year. Where the hell did the years go to.. My mom is really bad, and believe my thanks for the prayers but they dont work.. She has got so much worse.. I will tell her in the morning, that u sent her a message, sure she will appreciate it.. She does not even mention you guys anymore.. She just wonders how Kevin is doing and I said to her if Kevin got worse u would let us know.. Hope he doing well.
Hi Jo-anne. Thanks for the note. Sorry that it took so long to respond, but life seems rather chaotic and somehow email is the last thing that I get around to. It was wonderful to hear that your son is still walking at 12 - let's hope that Daniel will be too! I was interested to see that you had joined a Christian DMD group. Is it just a chat group? The pics of Seaworld are such fun.
I finally met Kelly, Brett, Aidan and Owen yesterday. They came to our place for the day and the kids had a blast! My god, they are such lovely people and it was so nice to hear australian accents! We had a bit of a pre-australia day bbq, and even today my kids are still talking about the boys. It's also really nice to meet someone else with an affected child and talk about our experiences. Mind you, we have organised to go out again (sans-kids) and promised to have a DMD-conversation-free night! LOL!
Oh, and forgot to answer your question, we didn't come back to Oz for Christmas. We ended up having a rather lonely (but almost white) Christmas here in our new house in London. I am hoping we won't be here for Christmas next year, but rather on the Gold Coast instead! I hate being away from family and friends in the holiday season!
Yes Saraya is spitting image of James, without the dimples. Everything about her is James, even down to her temperament (which is wonderful - she is a perfect baby). The funny thing is, just like James, she isn't crawling either and shows no interest in it! She just wants to stand and constantly tries to walk. I have also found out I am pregnant with baby # 4, though this was not planned at all! Still coming to terms with it, but know we'll be okay if it goes to term. Having testing (CVS) next week to determine if it's a boy and if he has DMD, and of course we won't be proceeding with it if the above is positive. I am hoping it will be okay as I am not a carrier, and I would desperately love for James to have a little brother (I feel he is outnumbered with so many females in the household!).
We are back in Australia in March. Julian will be doing his bike ride, so we will spend the first week in Sydney and then, when he commences his ride, I will take the kids up to the Gold Coast to our house and spend the rest of the time there. We fly back to Singapore (from Brisbane) on March 21st. It would be great to meet, esp whilst Jules is away as I will be on the Gold Coast by myself!
Anyway, just got home from the doctors and haven't seen the kids for the past 3 hours (things are so confusing and frustrating and long-winded here in terms of NHS) so I need to go spend time with them.
I help MDA fundraise actually so I really don't do it on my own. It teaches me a lot though. I just recently started a charity called Keep Jared Jumping to help me fundraise for our medical trips out of the state. I just ask people from church and family and friends but I am just getting started on that. I hope to grow and help other families one day.
Hello Jo Ann,
There is an interesting and informative article on the glyconutrients. I am hopeful we will get it posted this week, although please feel free to email me and I'll send it along.
Sorry for the delay. I'm happy to talk about gluconutrients with you. I do worry about spending a lot of money on them because there is no evidence in DMD to suggest benefit. What are you currently using?
Thanks for the messages, I will definately try and find out about deflazacort. As for December, I have no plans at this stage, most probably would be working but will also have some days off. My eldest son plays cricket and usually goes away the week before Christmas far noth or something like that but he would not mind any excuse to go and spend the day down the Gold Coast at either Movie world or Water world. I am sure we could catch up, we will just keep working on the dates closer to the time. Would love to meet you. We are about an hour away from the Gold Coast up here near the Brisbane airport, north side.