Replies to This Discussion

Permalink Reply by Sharon Malone-Dugan on December 8, 2009 at 6:43pm

Eunice,
I am so sorry for your loss. I know how devastating it is and continues to be every day. It is an emptiness that is never filled or relieved. It seems tobe an every day battle justot get throughthe day. My son Erich died on Ocotber 16, 2005. He diedin his sleep. I am so sorry to hear the last months of your sons life were so hard. This is a hard time of year. May your hoidays be blessed and full of good memories.

Permalink Reply by Sharon Malone-Dugan on December 8, 2009 at 6:45pm

Sharon Malone-Dugan said:

Eunice,
I am so sorry for your loss. I know how devastating it is and continues to be every day. It is an emptiness that is never filled or relieved. It seems to be an every day battle just to get through the day. My son Erich died on Ocotber 16, 2005. He died in his sleep. I am so sorry to hear the last months of your sons life were so hard. This is a hard time of year. May your holidays be blessed and full of good memories.

Permalink Reply by Eunice Rivera on December 8, 2009 at 11:31pm

Thank you Sharon, I know you understand how I feel. I have three grandsons and one granddaughter all under the age of 4. My first grandson was born about the time we found out how much trouble Michael was in. God is so good! You know what a loss we are at without our boys. My two oldest sons have gotten married and have bought their first homes. My house is so quiet and sometimes it seems like I find myself waiting to hear him call me because he needs something, and then their is only the silence. I still have his wheelchair and I haven't been able to part with it. I hope to be able to be of some help to other parents facing this terrible disease in their family. I don't quite know how yet but I am praying for the Lord to reveal that to me. I do have may good memories of Michael and I will focus on the reality that he is in paradise and I would not ask him to leave heaven. I know he is running and doing all those things his body didn't allow him to do while in this world. Thank you for letting me vent, I hope to do the same for you. We are truly blessed to have had our boys.

Permalink Reply by kathy mcdonald on December 10, 2009 at 4:13pm

My son Alex died 11 days ago. He was 17 and was not sick at all. No upper respiratory infection. I had him to a pulmonogist on Nov 16 to schedule the annual PFC for Dec 4, the sleep study Dec 10. On November 24 we took him to emergency for "cough" to make sure he wasn't getting pneumonia. And he was transported to Pediatric ICU 45 miles away. And he was improving. But then couldn't do it anymore. X ray showed no infection, but his lungs gave out. We had no warning whatsoever. But then he did not suffer at all. When we got to the ICU, he told me he was afraid to fall asleep because he thought he would stop breathing. that was Wednesday morning, and Friday night after fighting sleep for 4 days, he went to sleep and didn't wake up.

Permalink Reply by Eunice Rivera on December 10, 2009 at 6:16pm

I am so sorry for your loss. Words cannot express how my heart aches for you. My son Michael was not sick at all either, but the DMD attacked his heart and we had no idea. He didn't even have a cardiologist. His first echocardiogram was a few days before the first time his blood pressure dropped to a dangerous low. First time we called the ambulance was 11-14-06 and we didn't go home until 11-22-06. In the ER we found out that he had 10 to 15 per cent function of his heart. Normal adult has about 65, so Michael was in big trouble. They gave him the choice to get a defibulator put in, or let nature take its course. Being the fighter he was, of course he opted to get the defibulator and hoped it would prolong his life. Each time he had to be in the hospital I stayed there 24/7 even sleeping in the chair next to his bed. My son did not want me out of his sight, so every time I was leaving his room I would tell him Mom is going to the bathroom, to talk to the doctor or I'll be right back "mom loves you" and I would alway give him a kiss. Nov. 30 my husband had a heart attack (he is doing well) and my father passed away on 12-22-06. When we came home from the hospital, I ordered everything from home health care I thought I needed for my son. Oxygen, nebulizer, suction machine etc... He could not take the medications for the fluid around his lungs and heart because they would bottom out his blood pressure. My son could not eat, so he was actually starving to death. He very skinny at the time of his death, but I didn't realize it until after he was gone I saw a picture. On 2-18-09 he went to the hospital for the last time. He coded, on life support until 2-20-06. Now they are angels.

Permalink Reply by Denise Horgan on June 9, 2010 at 6:53pm

My son passed away January 5th of this year due to complications from MD. Timmy had Duchenne's and his heart stopped. He went to bed the night before woke up the following morning and said he was still tired. I went to work leaving him in the care of my mother and daughter. In one hour my daughter called me to say Timmy was not feeling well and she wanted to call 911 within one hour of me leaving for work Timmy had passed away. I went to the hospital not knowing he had passed. I was told that he died in his room that his heart just stopped. He was spared so much suffering and I was thankful for that but, I miss him more than words can describe. He was my whole life all my actions and thoughts were around him. I now have to find me and wait for the day to be joined in heaven with my angel

Permalink Reply by vilma rodriguez on June 14, 2010 at 5:35pm

Eunice, My son Ismael passed away on April 23,2010 and I was his caregiver until the end too. I want to be able to encourage other parents into seeking the Lord's help thru his word and to know you are not alone, we all miss our boys and wished things would be different but we have to make the best with what we have and to have hope that we will see them again in heaven. Please let me know how you are doing and know that I will keep you in my thoughts and prayers. God Blessed us with those boys and we will be able to understand God's purpose on this one day.

Permalink Reply by Eunice Rivera on June 15, 2010 at 5:50pm

Vilma, my son has been jamming with Jesus for three years now and I miss him so much. God is good! He called Michael home and has given me 4 grandchildren and another one in August. I will have 5 grandchildren under the age of 4, I am a very blessed woman. I am so sorry for the loss of your son Ismael, but they will be waiting for us! I am also on facebook with a multitude of other families affected by Duchenne. Please join us. May the Lord continue to give you strength.

Permalink Reply by Sharon Malone-Dugan on May 24, 2011 at 3:28pm

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 focus of my life was giving Erich a great life and keeping him healthy, now what was i to do? I wish more than anything I could resume that task with Erich once again.

Permalink Reply by Sharon Malone-Dugan on May 24, 2011 at 3:36pm

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 guilt that I was not with him, but at times I think thats how God wnated it, that he knew it would be that much worse to see him go. But not to be there with him, breaks my heart. I know how devasssting it is and as for you and I am so sorry you were not able to get there, but again maybe there were reasons we are not there.

Denise Horgan said:

My son passed away January 5th of this year due to complications from MD. Timmy had Duchenne's and his heart stopped. He went to bed the night before woke up the following morning and said he was still tired. I went to work leaving him in the care of my mother and daughter. In one hour my daughter called me to say Timmy was not feeling well and she wanted to call 911 within one hour of me leaving for work Timmy had passed away. I went to the hospital not knowing he had passed. I was told that he died in his room that his heart just stopped. He was spared so much suffering and I was thankful for that but, I miss him more than words can describe. He was my whole life all my actions and thoughts were around him. I now have to find me and wait for the day to be joined in heaven with my angel

Permalink Reply by carolyn stewart on March 11, 2013 at 10:33pm

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 so many medications,and he was on life support, his heart failure happened so quick he was fine all day on September 17, 2012, he did recognize family was there he would open his eyes and squeeze our hands, on the day the doctors showed me his chest xrays, i did not want to let him go, but he was suffering to breath, i did not want him to suffer anymore, when they took the life support away he died really fast, he did turn his head to look at me with tears and that look is stuck in my head forever. Everyone loved him, he died of Duchennes, he was born November 23, 1995 on Thanksgiving he was 16 years old almost 17, we were all planning to get together for Thanksgiving because we did not know how much more time he had , i was warned of that in April 2011, he was my whole life i took care of him until he passed away it is so hard now i miss him he was my whole life, i tried to go back to work but it is hard to do my job was to take care of my son, i cry  alot he was my only child. but i thank god i was there when he passed away, he is in heaven with all the other angels.