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
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
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.
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.
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.
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.
Hello Betty, how are you doing? Have your other sons been tested yet? I know how it feels to not know, I wanted so badly more children and don't know yet if I'm a carrier or not...Still waiting to see a genetic counselor.
Welcome - i havn't been on the site for a little while, life is crazed w/ our 3 young sons... our 4 yr old Levi was dx 2 yrs ago - it was a complete shock. Time will help you and the rest of us are here as well. The people I've met thru PPMD have truly CHANGED my life. It's a tough road but the road is being paved so our boys will have a smoother ride, I can feel it!!!! xoxo perlita
Welcome Betty! My name is Renea, my 4 year old son has also been recently diagnosed. I also have a 2 year old boy named River. I have not yet been tested nor has my youngest. We will bear that soon enough I guess! We will be taking Athen to Children's Hospital in Dallas, Texas to see Dr. Susan Iannaccone ( an expert on DMD and also accepts Medicaid).
welcome you have a place to find many answers and its a good thing. you will be busy with your little ones and coming here to find answers will be great for you again welcome Penny send pics we all love seeing the boys and their families