Young teenager with Duchenne passed away...

I heard that a 13 yo boy with Duchenne passed away just recently but I couldn't get any details. I'm very saddened by the news and I would like to know more. Anytime a boy passes away from this disorder it puts me in a depressed state especially when they are younger because it's not suppose to happen so quickly. If anyone has any information please post it here. I'm so sorry, I can't imagine what this family is going through. If anyone knows this family please send my condolences and please let me know who they are so I can include them in my prayers. Thank you.

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Permalink Reply by KarstensMom on January 7, 2009 at 1:04pm
Oh Laurie, I am so sorry to hear this very sad news. Karsten and I are new to Houston, and do not know this family or any MD families here. My thoughts and prayers are with Stephen's family. Sincerely, Jaime

Laurie Paschal said:
Yes, this was a boy in my town. He lived across the street from a friend of mine. I never did get to meet him, so I don't have any information on his health other than he'd had a rough year. There is a viewing tonight. I'm not sure when the funeral is, but I don't think I'll be able to bring myself to attend. If I get other information, I'll be sure to pass it along. His name was Stephen, and I'm hoping to have some contact with his family in the future. I'd very much like to add his name to my fundraising efforts and carry a picture of him with me when I run my marathon.
Permalink Reply by Jean on January 7, 2009 at 1:52pm
I did not know Stephen, nor anything about him, but I add my sadness and prayers for his family. I am also a grandmother of two young boys with DMD, and my heart is heavy for this grieving family. Jean Burns
Permalink Reply by Liisa Underwood on January 9, 2009 at 11:12pm
The story I heard about a 13 year old who passed was named Brian. See article: http://texomashomepage.com/content/fulltext/?cid=29541
Permalink Reply by MarcosDad on January 10, 2009 at 9:49am
Brian was not the one I heard of it was Stephen since I heard it before Brian passed away. This news is new to me and it is very sad. According to the story the teacher saw him on Monday and he passed away on Tuesday so it must have been a sudden death. That's scary. My heart goes out to Hurst family.

Liisa Underwood said:
The story I heard about a 13 year old who passed was named Brian. See article: http://texomashomepage.com/content/fulltext/?cid=29541
Permalink Reply by Jacobs Mommom on January 11, 2009 at 8:00pm
I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
Permalink Reply by Katherine M. Reynoldson on January 19, 2009 at 3:49pm
Jacobs Mommom said:
I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
Permalink Reply by Katherine M. Reynoldson on January 19, 2009 at 3:56pm
This is a reply to Jacobs Mommom:
There are quite a lot of young men with DMD, my son is 22 and was diagnosed at age 3 through genetic testing then and again just a few months ago with a deletion on exon 44. There is also a set of twin men age 51, in our area also with DMD. We know many DMD families with young men living fuller,active lives. Though I will say they face many challenges as well. Please do not give up hope. Many young DMD men are living longer.

Katherine M. Reynoldson said:
Jacobs Mommom said:
I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
Permalink Reply by Jacobs Mommom on January 19, 2009 at 4:35pm
Thanks for letting me know about you and your son Katherine. I have sent you a private message:)

Katherine M. Reynoldson said:
This is a reply to Jacobs Mommom:
There are quite a lot of young men with DMD, my son is 22 and was diagnosed at age 3 through genetic testing then and again just a few months ago with a deletion on exon 44. There is also a set of twin men age 51, in our area also with DMD. We know many DMD families with young men living fuller,active lives. Though I will say they face many challenges as well. Please do not give up hope. Many young DMD men are living longer.

Katherine M. Reynoldson said:
Jacobs Mommom said:
I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
Permalink Reply by Angela on January 20, 2009 at 4:33pm
I just found a story about another young teenager lost and he sounds like such an amazing kid!!! So sad he didn't actually get to be at the inauguration today, I know he would have represented all our boys well.

http://www.theoaklandpress.com/articles/2009/01/20/inauguration/doc...
Permalink Reply by Liisa Underwood on January 22, 2009 at 2:31pm
I just saw this as well. Why so many so young lately? It hurts my soul.

Angela said:
I just found a story about another young teenager lost and he sounds like such an amazing kid!!! So sad he didn't actually get to be at the inauguration today, I know he would have represented all our boys well.

http://www.theoaklandpress.com/articles/2009/01/20/inauguration/doc...
Permalink Reply by cheryl cliff on January 22, 2009 at 4:49pm
Yea Lisa, I feel the same as you. Since we've been at this DMD stuff for slightly more than 1 year I have heard of 10 deaths for an approx. total that averages one every other month. Two were in the UK and the rest were here in the states. I don't seek out this information - it manages to find me. How many more would there be (god forbid) if I started looking?

Hurry Exon Skipping and all the others in the pipeline!
cheryl

Liisa Underwood said:
I just saw this as well. Why so many so young lately? It hurts my soul.

Angela said:
I just found a story about another young teenager lost and he sounds like such an amazing kid!!! So sad he didn't actually get to be at the inauguration today, I know he would have represented all our boys well.

http://www.theoaklandpress.com/articles/2009/01/20/inauguration/doc...
Permalink Reply by Jacobs Mommom on January 23, 2009 at 10:11am
I just read this about Macenzie as well and wanted to say my heart goes out to the family:(

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