Nicole - posted on 04/14/2010 ( 6 moms have responded )




Dear Members,

I would like to thank all of you that have joined! I hope you can find friends, conversations, and friends to help you and your family that are going threw this period in your life. I found it better sometimes to talk with other moms you don't know rather than doctors or nurses and so that's why I started this group. I wish all of you and your families nothing but the best and lets just pray and hope they can find a cure sooner than later. If any of you ladies would like to chat or just simply vent please contact me ♥

Thank You,


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Stacey - posted on 09/10/2014




Hello my son is 3 and has Duchenne, he was diagnosed at 4 months, I knew it was a 50/50 chance I could be a carrier since I had a brother and cousins who had duchenne.
I was tested and found out I was a carrier, if anyone has questions or just wants someone to talk to who knows what you're going through you can email me at fightduchenneforpauly@gmail.com
I also have a Facebook page "fight duchenne for pauly"


Ronda - posted on 04/25/2014




Hello everyone i am raising my nephew who is 8 now. We found out when he was 5. I know some of the effects that the disease does. Would really like to know more and understand. We are struggling with my nephew he is a angery depressed and has emoinaly shut down. Want to it this is normal. So many other questions. Really feel like i am drounding on how to help him. Help

Hailey - posted on 03/21/2014




Hello. Robin, I see that your son is 18 :) I wanted to let you know that my Hero of a brother has DMD, and turned 27 on Feb. 19th. He was admitted to the hospital on that day, and had surgery for his permanent vent on Feb. 25th. He survived...like he ALWAYS does ;) He is currently at a rehab and we are waiting anxiously for him to come home!

Robin - posted on 01/26/2014




Nicole, I just saw your post about your son and his video games from, I think, 2010. My son is 18 (19 in April) and video games are his world! We found out when he was 5 that he had DMD. I've only spoke with one or two moms whose sons were in their twenties. I want to be prepared, as much as I can be, as he gets older. Our last clinic was November and his oxygen had dropped a few points. Very heartbreaking for us. His neck is now getting weaker. If he's not playing video games his head is propped up on about five pillows so he can relax while watching tv. He doesn't sleep well and we're constantly flipping him at night to help him try to get comfortable. Luckily, his heart function is as good as it can be considering. You said then that you son was 17 or 18, I can't remember, but could you fill me in on some things that have happened to your son in the last few years?

Kimberly - posted on 11/17/2011




Thanks so much Nicole. What a wonderful outreach for others who fight the same fight your fighting. I'm so glad to have found you and look forward to having this place to run to if needed. I am a mother of four children and have one son who is eight with DMD. Thanks again and God Bless.

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