Paul Johnson's Comments

Comment Wall (41 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 9:28pm on December 2, 2011, Wyatt's Mommy, Melissa said…

They are so sweet.  Just darling.

At 7:40am on June 13, 2010, Elaine Burgess said…
Hello again--As I said, I am very new at this and not sure what I am doing actually. But yes, I celebrated a birthday (60!) on Thursday. We celebrated by spending a few days at Cape May, a beautiful place and beautiful weather. I'll stop by to see you and to wish Henry a belated Happy Birthday.

Elaine
At 7:37am on June 13, 2010, Elaine Burgess said…
Hello Paul, Joanna and sons,

I joined about a week ago to read some of the blogs. This is my first attempt at social networking. Nice to see all of you in person and on the computer.

Elaine
At 12:04pm on September 24, 2009, lisa palm said…
Hi Paul,
We do see Dr. Finkel at CHOP, we are taking Ryan, 4 for a steroid check-up next week. Our 2 yr old Jack has DMD also, but not the dramatic symptoms Ryan had at this age. Thanks for contacting me, hard enough having one child with this, but to have 2 boys with it is very hard.
I JUST realized you are the run in Kennet Square we are going to do, With about 20 or so of our friends and family going with us. I have been in contact with several families but have yet to meet any, and I am looking forward to doing so.
I was born in Boston, we lived in Abington until I was 10, I still slip back into my accent!
At 2:23pm on September 9, 2009, Carolyn Kleppe-Collins said…
Hi Paul
Thanks for the note. I think that I am still in denial about the whole thing. I did get a chance to spend a week with my sister in law and their family this summer and it was hard. Keelan, like your Henry, will be 2 this month and I am just so sad that he will not have the opportunity to experience things most parents take for granted. His parents get so upset when he falls down and take it on as a personal failure that they were not watching him enough. I think they also feel as though no one else but them can watch him close enough. They are under a lot of stress and I just wish I could help them, but don't know how.

Thanks for thinking of me. I hope you and your family are well and I wish you all the best
Carolyn
At 7:51pm on September 6, 2009, Perlita & Gordy Hains said…
hey friend - how are you? hope your summer was a great one. Ours flew by! How are the boys & the PTC trial? please tell Joanna HI and that i think of you all often.
At 11:31am on August 17, 2009, Maria Cutrufello said…
sorry about that, I just added you
At 8:50am on August 17, 2009, Maria Cutrufello said…
Hi, yes I remember your team as well, Alex is all done with his biospy and things look good, I defintely see a little improvement in his strength.
How is your son doing?
Sorry I didn't get back to you sooner but I was on vacation and did not want to go near my email's...LOL
At 11:31pm on August 11, 2009, Carolyn Kleppe-Collins said…
Thanks for the response Paul. Your family is just beautiful. I appreciate your suggestions and will try to remain supportive and involved without being overbearing. Enjoy the rest of the summer and thanks again
Carolyn
At 5:56pm on June 30, 2009, Perlita & Gordy Hains said…
Conference was amazing. lots of hope for our sons, especially OURS due to Ataluren. Utrophin coming!!!! My husband was really touched by all the support as well. hope we can speak soon.
At 2:47pm on May 29, 2009, Perlita & Gordy Hains said…
Lots going on here too. Bummer about Atlanta, I will keep you all posted. As far as the Trust... my sis-in-law started it for us. Too much on our plate. we just signed the document & got the EIN #... Friends had a car wash for Levi so we made the 1st deposit - Gosh I hated doing it... Gordy, Levi & I are mtg w/ Congressman Tim Holden today at 4pm - Apparently he has supported DMD in the past - want to continue his trend. Lots of GREAT things coming for our Beautiful boys - I know this!!! Give Henry & Elliott big hug from Levi.

Hi to Joanna xoxoxo
perlita
At 10:58pm on May 27, 2009, Perlita & Gordy Hains said…
Hi Paul & Joanna - think of you often. Friends just had Levi's 1st official DMD fundraiser. A great car wash.... we put the money in Levi's "special Needs Trust"... Gosh - I hate having to have one of those. Anyway, we are getting ready for Atlanta. hope all is well:) perlita
At 10:05pm on May 27, 2009, Michael A. Papp said…
Hey Paul- How is your family doing? It has been a little crazy but things are settling down. Natalie is 5months and sleeping through the night. Michael is 3yrs old now and doing well. We just had our CHOP visit and everything went well. I believe the families of PA are trying to get together this sunday. I will be watching the children but Niccole is attending. Are you going to Atlanta? I will be there. If you are let's try to catch up........ Michael
At 11:53am on April 20, 2009, Perlita & Gordy Hains said…
Hey Paul - Talked to Joanna last nite... it was great! Please tell her THX & I really appreciated her insight into all this. Levi is a Premature stop codon, exon 23 - Gosh... hate even having to type that! Now we just sit & wait for a while. enjoy this rainy day, perlita
At 11:36pm on April 6, 2009, djamel fathi said…
Hello,actially We been in the US just for 8 yrs I never practice in US I worked for my self in north africa for 4 yrs then circomstance push us to immigrate.I miss my real job wich is working with big animals,I'm still looking for an opportunity to live and work some where in pa,oh,,,a rural area.
At 1:52pm on April 6, 2009, Perlita & Gordy Hains said…
God Bless you for thinking of us. We get the results 4/17, this was our choice... I'll call you to talk sometime soon, it's a bit complicated. I pray for Henry & Elliot each nite. We are doing better... I don't cry every minute. Hope you are all well:)
perlita
At 5:06pm on March 26, 2009, Perlita & Gordy Hains said…
From what Marissa mentioned... they don't have all parts back yet . Apparently Emory in Atlanta got hit w/ many requests for gentic tests recently & they are backlogged... or at least I hope that's the truth!!! I may call Chop to clarify..
At 1:41pm on March 24, 2009, Perlita & Gordy Hains said…
hey Johnson's - our Chop appt is re-sch AGAIN... now it's 4/6... can't believe it - this is brutal! perlita
At 8:39pm on March 18, 2009, Perlita & Gordy Hains said…
Glad to hear all is well... think of you often. We pray for Henry & Elliott each & every nite, along w/ some other little men we've gotten to know w/ DMD. I'll let you know how 3/27 goes... we just want to get that part over with!
perlita
At 7:27pm on March 16, 2009, Perlita & Gordy Hains said…
Hey - did you go for your PTC 124 check up??? Just curious. I've heard some trials are in other countries & if your son qualifies they would go for many weeks & do the trial there??? your thoughts???
We are doing better - really living for each day:)

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service