Eileen DeLong's 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.

Thanks,

Praveen

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?
Donna
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.
Thanks
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.
At 12:04pm on March 24, 2009, Mark Dickerson said…
Hi Eileen,
Thanks for welcoming me to PPMD. After registering on this site, I forgot to keep checking up. My wife, Danelle, is on every day and keeps me updated:)

It looks like your boys and our boys are very similar. I wonder if all DMD boys like legos, star wars, swimming and video games? Maybe it's just "all boys!"

God bless, and keep praying for a cure!

Mark
At 10:31am on February 2, 2009, Laurie Barton said…
Hi Eileen,
My son's are older. While we have had a great relationship with the MD Clinic Pediatrician, we really haven't received the kind of information you all seem to have with Dr. Wong. My younger son has had tendon release, tendon transfer and spinal fusion. How would you/have you worked out the logistics of pre op, op, post op exams over the months when in another state? What about things such as night splints, seating and wheelchair tweakings? We have always had a local pediatrician, and then drove 1-2 hrs to clinic location for followup on equipment/disease related issues.

If other needs develop, how do you work out the logistics? (We're in Eastern PA).
Laurie
At 10:04am on January 16, 2009, Marian Lamberson said…
Hi Eileen,
I was just going through my friends list and thought i would say hey and see how the boys are doing? Hope your Christmas went well and that you had a Happy New Year!!!!
At 12:40pm on January 5, 2009, Kathy said…
Thanks! This is the first time I am communicating with other parents of DMD and everyone has given me so much hope! I will be joining the NE parents group.
At 10:52am on January 5, 2009, Kathy said…
Hi Eileen, I feel like your family since we have the same deletions 3-7, We see Dr Wong next week and I can't wait to see what she has to say. I noticed your boys are on Steriods what kind of changes have you seen? Our Houston Dr doesn't seem to think our son requires them until he is weak. He told us to let him be a kid and he will self regulate what he can and can't do. I have so many questions for Dr Wong, I was left wondering about alot of things when we saw the Neruo guy here at the MD clinic. I'm looking forward to getting lots more info from Dr Wong as everyone else that has gone has testified to. Does it seem our main worry should be the cardiac problems with the 3-7 deletions? Any info is great appreicated.

Kathy
At 3:37pm on December 30, 2008, John Gorman said…
Hi Eileen,

it's just another set of people like your lot over there tired of being told we can do nothing.....here's to pushing the envelope even further in 2009.... I'm getting revved up !!

Happy new year to you and all your family and best wishes for 2009...

John, Anne, Lucas and Noah
At 11:04pm on December 25, 2008, neo said…
tanx eileen for your pleasing reply. see u.
At 3:06pm on December 24, 2008, Tina said…
Thank you for your Christmas wishes. My best to you and to your family!
At 12:20pm on December 3, 2008, djamel fathi said…
Thank you very much,I just want to know how much is the coast?
And wich form the medicine comes[liquid,pills....] ...
At 11:53am on December 3, 2008, neo said…
hello. i am father of two sons affected by DMD. sorrowful state f affair but still living life seeking happyness. i 'm from India and lawyer by prfession. see u.

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