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Remembering our B/DMD Boys who looses the battle with Muscular dystrophy. As family and friends, we advocate and battle this disease...but the real champions are our boys who struggles to live out their dreams but loose to a battle of a disease.

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Latest Activity: Jan 19, 2016

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Remembering our Boys

As family and friends, we advocate and battle this disease...but the real champions are our boys who struggles to live out their dreams but loose to a battle of a disease that robs them young.

Sadly, most boys pass on in their teens, while many may live on to their 30's, 40's and even 50's. Each boy is different and no matter what the case is, we hope for a cure before the disease robs boys lives.

Let this group be a memorial of the boys who fougt the battle in good faith and what their lives meant to us, not only as family and friends but also a community. The loss affects the family greatly, we won't deny this; but it also affects the DMD community as well.

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Duchenne Memorial Wall

Started by Dee Jul 4, 2015. 0 Replies 0 Favorites

Currently DMD is a fatal disease. Families, Parents are fighting for their son's life. A freedom our boys wish to be free from this disease- independence to live on their own, to marry and have a…Continue

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Comment by arvind jain on January 7, 2010 at 2:28pm: Arvind was 13 when he passed away. He went on a BiPaP machine when he was 8 years old. All I will say is that I agree withEunice. I dont know the Muscular Dystrophy Association or what they do but I know that the charities in the UK go on abt how boys are living much longer into the late 20s and 30s but what they fail to acknowledge is that the boys are still dying young too!!! and we were never given the choice of surgery for Arvind as it was too late and so he had to wear a back brace to see if this would help.x

Comment by Sharon Malone-Dugan on January 4, 2010 at 1:47pm: My son Erich had the spinal suergery when he was 15. His scoliosis was so bad that had we not had it he would have eventually suffocated becasue of his limited lung capapcity. Although it was a tremendous surgery, it went well and he never had any difficulty withthe surgery or the rod. theonly negative was that he could not bend his back in any way, but that did not create too many issues. When Erich was 17 he went on 24/7 ventilaotr support. We did givehimthe choise and he chose the ventilator, and although it now required a nurse to be with him when he went to school, he became so healthy. He gained weight, he could eat better, breathe better, speak better. It did improve his quality of life and I know he was glad that he did this surgery. It did not limithis life at all and infact he did and we did as much if not more as a family once he went on the ventilator as he was not struggling for air as much. I kow so many parent do not want theirsons to be put on the ventilator, yetitgave Erich and his family 7 more wonderful years to spend together. Erich did not suffer alot; he alwasy had hip pain from sitting in the wheelchair and no matter what cushion etc we tried, it persisted. He was in college at Ca lState Northridge when he passed away. The computer was his avior. He became whoever he wanted on his computer; he was not limited by anything. Becasue of thelimited strength in his fingers to manipulate the mouse or stick we gothim the "morse code" adaptors for the computer, and he became so proficient in morse code, it was amazing! I could go on and on, like all of you could about my son.

We had kaiser insurance through most of hislife; and they treated him so well. He had a magnificent doctor that took such good care of him. We knew that Erich's heart muscle was compromised; he had both EKG's and Echo's on an annual basis.

The MDA is a joke. They never did anything for Erich or us. I cannot even watch the telethons nor give to that organization. They only hype it up when it is telethon season and then after that rarely do we hear of it.

I unfortunately was never a realpart ofthis community prior to Erichs death and really notuntil recently, Erich did in 2005. It seems like yesterday though. What I wouldn't give to hug him and hear his voice and laughter again. The things I at times got annoyed with ...like the beeping of his ventilator, I would give anything to hear again. If only ...

Comment by Eunice Rivera on January 4, 2010 at 1:06pm: Michael never had the spinal surgery, he had no sign of scoliosis. We knew more about our sons than the doctors. We were their arms and legs. Mikey never had pneumonia or ever in the hospital until 11-14-06. The Muscular Dystrophy Association goes on TV and takes the credit saying that boys are living longer with Duchenne, what did they do or Michael? We didn't have the right insurance, we had Kaiser so we went to Kaiser Hospital. While I was keeping vigil at Mikey's bedside, I asked the doctor why hadn't they seen the trouble his heart was in. I took him in for his EKG's whenever they were ordered and he told me they wouldn't be able to see that with an EKG he needed an echocardiogram. They never ordered one. He looked great, he didn't have any of the typical systems a boy with Duchenne exhibits, except for the weak muscles, contractures in his knees and ankles and he was starting to have trouble with his hands. These boys love their video games and their computers because they would excel mentally even though they had physical challenges. Reading your stories just connects me so much to you and I L O V E Y O U ALL! This is great I have sisters out there that know exactly how I feel.

Comment by Teresa Buchanan on January 4, 2010 at 10:40am: Kathy made a typo it's Cody not Cory and he did suffer these last three years after his spinal fusion. The doctor cut the rod long for growth but Cody never did get any taller so he was never able to get into a wheelchair again. We tried different seats, we had the reclining chair, nothing worked. Cody had a hospital bed at great grandma's house and our house. He spent two weeks a month with us and two with her. That's the only time he got out of the house because the medical community abandoned him. No doctor would touch him until July of 2009 when he was admitted to the hospital and discharged to hospice. His last trip to great grandma's was August. If I could go back, we never would have had the surgery.

Comment by kathy mcdonald on January 4, 2010 at 10:23am: We too have been told that Alex was such an inspiration to everyone he met. I feel honored that I was able to take care of him. He was so brave.....

Comment by kathy mcdonald on January 4, 2010 at 10:22am: Did Michael have the scoliosis surgery? Did he have a trach? My 17 year old passed away Nov 29. 2009. He did not have the scoliosis surgery. Cory Buchanan passed away the next day. He had the scoliosis surgery 3 years ago and had suffered the last 3 years. He too was 17. The scoliosis affected Alex's lung capacity. I just could not do that surgery to my son. I did not want him to suffer at all. He did not suffer. He went to sleep and never woke up. I never had any warning at all.....

Comment by Eunice Rivera on December 31, 2009 at 10:18pm: Today is New Years Eve 2010 and I will await the new year without my son Michael. He didn't really drink but on new year's eve we would toast in the new year with champagne, a wine cooler, or sometimes a corona beer with lemon and salt. Every year Mikey would say to me, "they said I wouldn't be here but look I'm still here!" Michael had such a love for life and he was determined to live his life as full as possible for him. I've been told by several friends and family members that my son has been an inspiration in their lives. Wow! Our sons are heros and the bravest people we'll ever know.