I am 25 and a student at the University of Phoenix working on my AA in Criminal Justice. I have three wonderful children and a loving husband.
About my family:
I have been married for 4 years to a wonderful man named Dave. I have three children two little boys and a little girl. Both my boys have DMD, this is new to the entire family, we found out in March of 2009.
Name(s) of child(ren)/individual(s) with Duchenne:
Jordan and Nathaniel
Age(s) of child(ren)/individual(s) with Duchenne:
Comment Wall (9 comments)
You need to be a member of PPMD Community to add comments!
My son have deletion of exon 18-25. And I saw your comment in deletions group, both of our case need exon 17 skipping. Is it right? Hope to be your friend. Please contact me if you have any information about exon 17 skipping. Thank you very much
It is good to be back on the PPMD Site. I was wondering if any one would be able to help my family, My oldest son is going on a make a wish trip and his Biological dad is going, However my Husband who has been in his life since he was a baby is wanting to come along too. We dont have alot of money however we are trying to make that goal possible and was wondering if any one had any tips or could help in any way!! I just really want my husband to be there to experience this with him. Thank you all!!
Wow, just read that your boys have deletion of 18-42. My son has deletion of 18-41. You are the first one that has a son with the same (almost) deletion. Pretty rare, it makes our boys even more special. How are they doing?
I have heard that the deletion that the boys have is pretty rare!! Our sons are 4 and 7!! With our boys it was there walking and the trouble they were having even at an early age.We have done some research however, I am really worried about the side effects and that is what made us decide to not go through them!! Thank you for the information and I hope to hear again!
Your boys have a similiar deletion to our little boy, Dylan. His deletion is 16-43. I have only seen one similiar deletion on the Leiden Database in Holland.Dylan is 5 in May this year. Not sure what triggered your suspicion, but with Dylan it was his speech. He is making some progress with that and will be going to school in September. Dylan was also very hyper but the speech and listening thereapy worked great for him. I had similiar worries about steriods but we have decided that we have to go down this road. Once his inoculations are up to date and his bloods are ok, we will go ahead with the steriods. Even without the steriods Dylan has done things recently like ride a bike!! I'd suggest reading the Lancet Jounal for the standards of care for Duchenne for info on steriods??
We found out becuase they thought my oldest son had Celebral Palsy, so they sent us to see a specilist and after two hours and running test, they came back and said that they had some news to tell us and that they did not think the inital thought was incorrect he had Muscular Dystrophy, given my family historty and the results of the Blood test they did, then they said I needed to get my youngest tested and a week after my oldest son we found out about our youngest son. The first appointment we had was with a genetesist and both my boys have a deletion of exon 18-42. I am the carrier and I also have to get my middle child my only daughter tested to see if she is a carrier as well. I have decided not to start steroids, on my boys I don't like the side effects I saw while doing research. I don't mind the questions it lets me know I am not alone!
Ya i know the feeling. It turned our world upside down in the worst way. Its still hard, and i still cry, very much so...somedays i feel so helpless...
We found out about our oldest first, then found out i was a carrier, then got the results of Malaky, the baby, which was the final blow to all of this.
Not sure how i made it though those first weeks, let alone the first days.
We are better now, we have come to move forward and try to have the happiest life we can, knowing that we are limited on time with our kids.
We have a wonderful life though, the kids are happy and my oldest takes it with such bravery and pride, that it makes it easier on all of us.
How did you find out about your kids? I assume your a carrier too.? Our deletions are 14-19, not sure if youve seen the genetesist yet or not? Have you started supplements of steroids? SOrry for the questions, just rare to meet another mom who also has two boys. Chat soon!! Marian
Hi Victoria, I am sorry to hear about the DMD. I also have two boys who were diagnosed and share your pain. We found out last year, and it has devastated us. I will add you as a friend and maybe we can chat.