Eileen DeLong
  • 52, Female
  • Derry NH
  • United States
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Profile Information

About me:
Manifesting Carrier exon deletion 3-7
Always had big calf muscles. Kids would make fun of how clumsy and uncoordinated I was. So this explained a lot.
I love gardening and cooking and playing with my boys!
About my family:
History of Duchenne, had an uncle and 2 first cousins with it
Both of my boys have it exon 3-7 deletion
Jared 6/9/99
Calvin 5/29/96
They love legos, star wars, swimming and video games.
Name(s) of child(ren)/individual(s) with Duchenne:
Jared DeLong and Calvin Henry
Age(s) of child(ren)/individual(s) with Duchenne:
Derry NH

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Eileen DeLong's Blog

Inspirational article published by Pat Moeschen

Posted on September 2, 2010 at 9:43am 0 Comments

I wanted to share this with everyone!

Pat you are an inspiration to us all!

Not waiting to live, not living to wait... by Pat Moeschen


New news

Posted on April 23, 2010 at 9:57am 1 Comment


I wanted to share this with everyone.

British Journal of Pharmacology, 2010) Co-administration of ibuprofen and nitric oxide is an effective experimental therapy for muscular dystrophy, with immediate applicability to humans

Clara Sciorati, Roberta Buono, Emanuele Azzoni, Silvana Casati,…


Thank you

Posted on September 26, 2008 at 12:00pm 2 Comments

I just wanted to say thanks to everyone here at this site.
It is so easy to forget that I am not alone in this fight.

Comment Wall (43 comments)

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At 11:11am on September 13, 2018, Praveen said…

Thanks Eileen for getting back. I sent you friend request on Facebook too.

How are the kids doing? Didn't see any update from you for a long time.

There is a facebook group as well for exon 3-7 deletion. Once you accept my request, I can add you in the group.



At 10:27am on December 6, 2011, adnan sarwar said…

Hello. I m Adnan Sarwar from Pakistan. Having muscular dystrophy backer type

i m interested to get information about new research and meet with other md

and their family for discussing issues related md. hope u help me and guide me

in this connection.   ..........thanks.

At 10:59am on February 10, 2010, Veronica E. said…
Eileen, I'm so glad to hear I'm not alone!! Sometimes I feel like I'm the only person in the world who made the choice I made. I too am so happy to have my little sweeties. My uncles always said they were happy and had great lives -- I just hope my Max feels the same way!

I wonder if I'm a manifesting carrier too. I'm quite clumsy and the opposite of athletic, but my calves have always been on the small side ...

Thnaks so much for your message!
At 5:39pm on September 30, 2009, Pilar Rizzo said…
Hi Eileen,
My name is Pilar, my son is 11 years old, he is deletion 13-17, i wonder if you could email-me the link about the article you mention about deletion in this areas of the genes? i really apeciated. I'm glad to join the forum i have been feeling pretty lonely ,with my son's condition. by the way, i'm from new jersey...and i have 2 other boys .12, and 4 years old..
At 1:58am on August 29, 2009, Jeni Ward said…
Thank you, Eileen. Colin is doing great so far! We are hoping to start on deflazacort soon, but wondering we should wait until we get an appointment in Cincinatti. There's so much to think about! That's good to know about the exon skipping. I wasn't sure if skipping 8 would work for a 7 deletion. I hope so!
We have family in New Hampshire (Charlestown/Claremont), so if we come visit again, we'll look you up.
Your boys look wonderful in your pictures-it's great to see older kids with DMD looking so happy and healthy! Colin is a very happy boy, and I am hoping to keep him that way! Thanks for your message!
At 9:33am on August 14, 2009, Donna Taylor said…
Would love to see your pictures!
At 11:16pm on August 12, 2009, Donna Taylor said…
I didn't know you had a green thumb! I grew up in a family where all of the women loved gardening. When we got together we spent more time outside walking the yard than we did in the kitchen. Unfortunately I have a tiny postage-stamp sized yard so it doesn't require much work. To make up for that I got on the landscaping committee of our HOA and I've been busy getting our new neighborhood sign/pocket park finished.
At 9:38am on August 4, 2009, Donna Taylor said…
Hey Eileen,
Great to hear from you. Did you make it to the conference in Atlanta? I was so disappointed that I couldn't go. I took Jordan to see Dr. Wong in early July and his results were very good...heart and lungs are still strong (PFT better than last year!), strength tests, everything was same or better except his hamstring flexibility. He's not good about doing stretches and now that he's a teenager it's harder for me to force him to do anything that he doesn't want to do. How are you holding up?
At 8:47pm on May 14, 2009, Regina said…
Hi Eileen--
my son is deletion 8-11, but his symptoms appear mild right now (he's only 7). However, I was wondering if you could send me the link to the article you mention about deletions in this area of the gene? Is it by Dr. Flannigan? I saw mention of one somewhere else, but haven't actually seen the article yet.
Hope all is well.
At 3:15pm on April 29, 2009, cindy q said…
Please note the location of the MGH DMD Parent round table on Saturday, May 2 is at the Holiday Inn in Rockland, MA.

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