Started this discussion. Last reply by james john Oct 17, 2012. 9 Replies 0 Favorites
We have 3 sons with DMD. They are currently using strollers/push chairs for long walks, but when I'm alone it is hard to push them all. Our oldest is 6 and yesterday said he wished he had a…Continue
Started this discussion. Last reply by Betty Vertin Aug 21, 2011. 7 Replies 0 Favorites
In the last 13 months 3 of our sons have been diagnosed with DMD. They are ages 5, 2, and 6 months. My oldest son is getting too big for a regular stroller. We are needing to purchase a medical…Continue
Started this discussion. Last reply by Glenn Eisenring Nov 10, 2010. 10 Replies 0 Favorites
We live in the center of Nebraska. We have recently heard that the Children's Hospital of Cincinnati, OH is very proactive in their treatment of DMD. We haven't been overly impressed with the…Continue
© 2023 Created by PPMD.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
Comment Wall (13 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
Your children are really beautiful! :)
your childern are so beautiful how are they doing.
hi betty my name is kimmy watters i just want to share that i do admire you very much i have friend who has dmd, . i just have lot respect for the mom there are just so strong do you ever cry sincerely kimmy
Hi Betty,
We were in Cinci yesterday and I think I might have briefly met your son and husband as we were heading to the cafeteria. My son Ben is 6 also and was a bit hungry and grumpy so we didn't get to chat much, but I thought I would try to connect with the families we met yesterday through ppmd :) Take care, Jessica
Betty,
HI - just a follow up. My sister and I sent a note to Coaching for a Cause but neither of us have heard anything yet. Can you send me your father-in-law's phone number? I will give him a call.
Betty,
Hi, I just heard about the Coaching for a Cause event at St. Pius October 15. I sent a note to to the organizer (I think it is your father-in-law) to volunteer to help. My sister works at St. Pius and sent me the information; she also wants to help.
Are you guys going to be there? I would love to see everyone.
Robin
Hi Betty!
I'm scrolling through PPMD's site and checked my blog (I don't write much on it). How are things going for everyone? I think about you often after meeting everyone at the Triathlon and hearing that Charlie was also diagnosed with DMD.
Our Duchenne Challenge Cup hockey event was a big success ~$30,000 for PPMD. They are already talking about next year.
The research information on the PPMD site sounds promising for exon skipping. I pray they come up with something soon.
Let me know if you and the family are ever in Omaha, I would love to see you again.
Robin Taylor 402-305-0701
Welcome Betty. Sorry to meet you here. This disease can be very isolating so I am glad that you found this group. There is a lot of knowledge here. Please remember that dmd is a spectrum disease and every kid manifests differently. Let your son let you know what he needs and arm yourself knowledge to help him be all that he can be. If you can travel I recommend the PPMD conference. Take care.
Karen (mom of Erik 18)
Sorry about your news..I have 2 with DMD and it was tough finding out about the second one..but we are surviving, thriving and we're all ok..That was 12 years ago..my sons are now 16 and 12..my youngest boy 9 does not have DMD. Have you tested your baby yet?..don't get discouraged..If you need any advice just ask..hang in there.
Lisa Groeger
View All Comments