I am just your average dad who loves his son......
About my family:
I have a 6 year old named Ryan. I am divorced and live with my partner Leigh and her kids Josh and Mikayla. Ryan stays on the weekends. We do that happy family thing. Ryan has always waddled and was always a slow runner, and has had massive calf muscles for as long as I can remember. Ryan has a duplication of the number 2 exon. It has been a shock to us all, but we are working our way through it. At the moment Ryan is mobile and active, although he has slowed down a bit in the last few months. We just move day by day.....Life could be worse.
Name(s) of child(ren)/individual(s) with Duchenne:
Ryan Phillips
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Wollongong
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Hi Andrew, please check out your car show event I just added here in PPMD community. Also on Facebook. Let me know if I got anything wrong and add all the comments you like. Thanks again for all the hard work and wishing you success.
I am glad to see you checking out PPMD. PPMD has been the best thing to happen for our family since we found out about Quinten.
Quinten will turn 9 this weekend. He is still very active and has few limitations. He does everything his friends do. He is walking, running, jumping and gets up off the floor with out any help or by using the Gowers maneuver.
He takes pred and some supplements. We stretch him every night and he gets PT twice a week. The days he doesn't get PT, the school nurse stretches him during the day. He sleeps in AFOs and we have a mobility scooter for long walking trips like the zoo.
We feel very lucky that he is doing so well. Make sure you keep up on his stretches, PT and overall health. We think it has made a positive impact on Quinten's ability to keep up with his peers.
I wish you the very best, and if you have any questions don't hesitate to ask. You can ask anything, I mean anything, I don't get offended by much.
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I am glad to see you checking out PPMD. PPMD has been the best thing to happen for our family since we found out about Quinten.
Quinten will turn 9 this weekend. He is still very active and has few limitations. He does everything his friends do. He is walking, running, jumping and gets up off the floor with out any help or by using the Gowers maneuver.
He takes pred and some supplements. We stretch him every night and he gets PT twice a week. The days he doesn't get PT, the school nurse stretches him during the day. He sleeps in AFOs and we have a mobility scooter for long walking trips like the zoo.
We feel very lucky that he is doing so well. Make sure you keep up on his stretches, PT and overall health. We think it has made a positive impact on Quinten's ability to keep up with his peers.
I wish you the very best, and if you have any questions don't hesitate to ask. You can ask anything, I mean anything, I don't get offended by much.
Anthony