I am writing in response to Debra from CureDuchenne and other constructive writers who commented on my recent blog post. Thanks especially to Debra and Hannah for helping me realize that I clearly lacked some basic knowledge about Duchenne Muscular Dystrophy. After spending some time researching this devastating disease, I have begun to understand a little more about it and to appreciate how much families are suffering from this disease that strikes young children and currently has no known cure. For those, like me, who were ignorant of the basic facts of the disease, I would like to tell you some of what I learned. Duchenne Muscular Dystrophy (DMD) is a genetic disorder carried on the x chromosome that afflicts about 1 in 3,500 boys (and some girls according to http://ghr.nlm.nih.gov/condition/duchenne-and-becker-muscular-dystrophy). If any readers are interested, I found http://www.cureduchenne.org and http://www.mdausa.org/disease/dmd.html and http://www.nlm.nih.gov/medlineplus/ency/article/000705.htm to be very informative sites. Please let me know of other sites people may visit to learn more about this disease. My deepest sympathies go out to victims of this disease and their families.
Wow! What a thoughtful re-consideration of your earlier post. I had never heard of this disease by name and I had no idea its consequences were so awful. Thanks for this!
ReplyDeleteAs one of the parents who posted on your last blog post I would like to say thankyou for posting this.
ReplyDeleteThank you. From another DMD parent.
ReplyDeleteI appreciate your response to the posted comments. You'll find parents of terminally ill children to be quite passionate about their cause. I subscribe to the opinion that all can be turned to good and I think you've opened some new eyes to our cause. If you ever want to get involved with a charity, please contact CureDuchenne. You might also want to post our website as a resource: www.CureDuchenne.org
ReplyDeleteThank you so much,
Debra Miller
Thank you so much for researching and learning about Duchenne's. I'm sorry for the strong words that were written on your original message. We are a very passionate group of parents whose only goal is to better the lives of our sons. Thanks, again.
ReplyDeleteHey this sounds wonderful, and I'm sure has made everyone feel so much better:) I'm glad you looked everything up, and even left many links for those who are interested:D
ReplyDeleteThank you for researching Duchenne and now helping us create awareness for our boys. I am the mom to Hannah and to my precious son with DMD. It is devastating and I thank you for your apology. You are a good guy!! :)
ReplyDeleteI also would like to thank you for taking the time to research DMD, and most of all for taking the time to post an apology. That was most considerate of you and very much appreciated. As a parent of a boy with Duchenne, I can say that life is challenging at best, and we develop a quickness to be defensive due to the lack of care and understanding we encounter from uninformed people on a daily basis. Thank you for taking the time to learn and to share with others. All the best to you.
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