Joyce Carpenter
  • Female
  • Kalamazoo, MI
  • United States
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H1N1 injection for boys with DMD

Started this discussion. Last reply by Joyce Carpenter Dec 2, 2009. 6 Replies

 

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Profile Information

About me:
I am a pediatric intensive care nurse and have been a nurse for 40 years, mostly in pediatrics.
About my family:
I am married to Don and we have 2 children, Kari, 26 and Ben,22. Ben has DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Benjamin Ryan Carpenter
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Kalamazoo, Michigan

Joyce Carpenter's Blog

New Yorker article

Posted on December 27, 2010 at 5:40pm 0 Comments

Dear Pat,

As soon as we heard about this article Ben and I had to find the magazine.  We have a small store, old , here in Kalamazoo called Michigan News.  Sure enough they had it and I bought it.

What a wonderful article!  Thank you so much for sharing with us.  I never heard your whole story about Christopher and Patrick.  I loved the part best where you went to see the neurologist who said you should have aborted your second son's pregnancy.  I applauded and cheered you when…

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Thankful

Posted on November 28, 2008 at 9:30am 0 Comments

Dear Pat,

How sweet to thank us. I am so thankful that we have you and PPMD organization. So much progress has been made. I am so amazed that now we have the NIH looking at muscle diseases and was appalled that they had not done so until PPMD came along. We have met so many other families dealing with this disease and I love sharing with them and hearing their stories about their sons. What a neat group of people!!!! Keep up the good work. And I am so thankful for our daughter and her… Continue

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At 10:21am on January 9, 2010, Christine Marie Pierce said…
Lance was diagnosed when he was 7. We go see Dr. Giordano at Hershey medical center. We are about 15 miles North of Allentown Pa if that helps. Lance is doing great. He is a sweet boy and gentle natured. :-) He is also pretty tough with all he has to deal with. I have been a real estate agent since 2000, but now I have my teaching certification and I am currently looking for a full time teaching position. I am certified for elementary, middle school science, English 7-12, and Family & Consumer Science..and get this... I can't seem to find a job! I will though, and I can't wait! I just LOVE teaching. God Bless you Joyce, for working in ped. ICU. What an emotionally draining job I would think. I think my husband Marshall and I will be going to Washington DC in February. Anyone else? ;-)
At 9:54am on January 8, 2010, Christine Marie Pierce said…
Joyce, I am so thankful that you post! My son is only 10 and until I read how old your son was, I really believed that my son was at his mid-life. He might be, but I'll bet he's not and that makes me have hope. I had also chatted with a man who was 37 and has DMD. You and Ben hang in there, we are on the egde of that medical break through with this exon skipping drug. ;-)
At 10:33am on November 28, 2008, Julie Garcia said…
Hello Joyce!

I have met Don and Kari both in DC! What a wonderful family! I can not say enough good things about them as I know you understand by what I read on your Blog. You are also a pretty special person to have raised an amazing daughter like Kari.

I can only say thank you for your wonderful family, yourself included.

Please give my best to Don and Kari and I am sending a heartfelt happy holidays from my family to yours.

All the best!

Julie from California (that is what Don calls me)
 
 
 

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