"HI , I have not been on for a while, M y son Emmanuel Stewart AKA Manny passed away September 26, 2012, i was told his heart was weak and he could not breath on his own, i know my son did not want a trach and i did not want him to suffer, he was on…"
"Sharon, there is a group on facebook called The Face of Children Fighting Duchennes and there are other groups. There are many of us in these groups. Please join us on Facebook. My email is firstname.lastname@example.org"
"I am so sorry to hear of your sons passing. I know it has been over one year but I know also it seems like yesterday. My son Erichs heart just stopped i n his sleep one night as we discovered on the mornig of OCt. 15, 2005. I still have so much…"
"I think the hardest thing besides losing our sons is trying to find ourselves again. After taking care of my son for 24 years and when he died, I only knew myself as Erichs caregiver and mom. Now who was I ? Yes I had two other daughters, but the…"
I am a wife, mother, grandmother, sister, daughter and I am a very blessed woman. I have many very good friends and I am a very good listener. My family and friends are very important to me but my God is number. My son Michael is now with the Lord and free of Duchenne Muscular Dystrophy. Michael and I never gave up hope for a cure for DMD but we ran out of time. Mikey entered the gates of heaven in February 2007 and received eternal life with Jesus which was better than a cure here on earth. Our boys can never be given back everything that DMD steals from them and us (the ones that love them). Michael was 26 at the time of his death and would be 29 years old now. I miss him so much!
About my family:
I have four sons and three grandsons. I have been married for 35 years to Johnny. My sons are Eric, Johnny, Michael and Matthew. My grandsons are Eric Jr., Johnny, and Jaiden. Isabelle M. Rivera is our newest addition to our family.
Name(s) of child(ren)/individual(s) with Duchenne:
Michael B. Rivera
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
My son Michael entered the gates of heaven on 2-20-07, at the age of 26. He passed away from cardiac arrest. I will be attending a funeral on Friday June 6, for Dominic Sandoval 15 years old, he also had Duchenne Muscular Dystrophy.
Don't forget to go there and cast your votes. There are less than 1800 votes and I know there are a lot of you that may not know your vote is needed. I found this site through facebook, it is Chase Community Giving. They have 5 million dollars they will donate to the charities with the most votes. The link is www.facebook.com/ChaseCommnityGiving.
I am so sorry to hear of your loss and the loss of another one of our children, Dominic.
I live in Sacramento California. My son is 16 years old. There is so much our children need. I am very active in advocating our congress for more money for research and care because our children desparately need this.
I would like to recommend to areas I think you will find of interest and I hope as a community we can help each other and push forward monies to change the course of dmd and establish better care.
Go to groups and join California groups. I hope we build a lot of resources to help each other.
Another so very important section is under the Discussion forum and that is Advocacy. We are presently pushing hard to get the MD Care re-authorization bill passed. Both Senators for California have signed on and we need more House members to support it. Please let me know if you need more information and how you can help. You may already be active in this. I am just trying to help push to get as much help as we can.