Paul Johnson's Comments

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At 9:28am on March 4, 2009, Perlita & Gordy Hains said…
Hey Paul - Can you believe CHOP had to cx out Fri appt - Levi's genetic tests are not all in yet - new appt 3/27...
At 9:07pm on February 28, 2009, Perlita & Gordy Hains said…
Hi Paul & Joanna. I just added some pics of our boys, thought you might want to take a look - as I see yours in the slideshow, too cute perlita
At 1:19pm on February 24, 2009, Niccole Papp said…
Thanks just left a note for your wife.
At 2:38pm on February 23, 2009, Niccole Papp said…
HI Paul, I know you and my husband have talked but I was just wondering how your wife is doing with both boys. You guys live so close to us we should try and get together sometime soon. Hope all is well. By the way your kids are adorable!!!
At 9:01am on February 5, 2009, Maureen Johnson said…
Hey hon,
I hate being so far away and I guess that joining some of these discussion sites (not that I participate much, just lurk) in some strange way makes me feel more connected. There is sooo much to learn about, process and discover.
I have also discoved that I can read about the same subject in several sites - understand one and be confused by another. So sometimes it takes me several sites to figure it all out!
I cannot believe that since I "suggested" to you last July that you blog more often that you would be so good at it! Although we talk on the phone there are not often times when we can really talke with the boys in the backround, etc. and I have learned so much about what is going on with them, you and Jo, and just your feelings from those blogs. I hope that it has also be somewhat of a theraputic thing for you to get some of those feelings out.
Love you - Mom
At 11:46am on January 28, 2009, Angela said…
Hi Paul,
I LOVE the new pictures! The boys are so cute!!!
How are you all holding up? We are keeping the booze to a moderate level ;~)
Let me know how Elliott is doing as the weeks go on. I can't believe Jack is at 6 months already!!!
Ang :)
At 9:13am on January 28, 2009, Vonda Fox said…
Very cute pictures of your sons! We pray that this drug treatment will be a big help to your family as well as ours! See you at the next appointment.
Vonda Fox and family
At 2:09pm on November 26, 2008, Marian Lamberson said…
Hello,
I see that your aunt joined..., I thought Henry and Elliot were her sons, but looks like they are your gorgeous boys!!! Sorry for the mix up, just wanted her to have a warm welcome. My sister has a group for Aunts...let your aunt know.
Take care!!!
At 4:38pm on November 10, 2008, Ivy Scherbarth said…
That sounds wonderful. I look forward to seeing the pic!
At 12:50pm on November 5, 2008, Julie Garcia said…
Paul,

You have beautiful children. I am sorry both your sons have dmd. I hope this website and the community help. I pray all our children will find relief soon from dmd.

All the best!

Julie

Thanks for the counter information.....I am trying it out
At 10:28pm on October 31, 2008, Marian Lamberson said…
My sons also share the same fate. God bless you and your gorgeous family!!!!
At 3:22pm on October 29, 2008, Tom & Sheila Cuccia said…
Hi Paul,

Yes we are participating in the MTC as Team Liam. It is our first one, and we are looking forward to it. We'll see you there!

Sheila & Tom Cuccia
At 8:28pm on August 23, 2008, Sharyn Thompson said…
Hi Paul,

You have such gorgeous boys!

I was wondering if your sons got accepted into the PTC124 trial? My son was 4 in May but they have said he is too young. I am curious if any other boys have been included under the age of 5.

Thanks,
Sharyn.
At 8:33pm on August 12, 2008, Steve K said…
Hey Paul. I finally made it to the pages everyone keeps telling me about!
At 3:37pm on August 5, 2008, MicahsDaddy said…

LOL....you can steal my idea with the California Angels slide show i created for the CA page and we'll call it even.

At 3:24pm on August 5, 2008, MicahsDaddy said…
Hi Paul,

I hope you don't mind, but I stole your idea. I added to the Califonia Families group some info like you did for PA with regards to senators, reps, and medical info.

Good idea to have that stuff available immediately when going to a State group.

Take care,

-Christian
At 9:52pm on July 28, 2008, Lauren M Fritz said…
Hi Paul and Joanna,
We just learned this evening through a call from CHOP that our younger son, Ryan, has DMD also. It feels important to me to be able to talk with you, as I think it is even more rare to walk in these particular shoes. John, my husband is really thrown, angry, overwhelmed. I have a different style but I'm sure the same basic emotions. I'm hoping in some time we might be able to meet you. I'd like to call you after I have some time to try to digest this new reality. Thank you for your number, and thank you for coming into our lives today.
At 11:19am on July 28, 2008, Lauren M Fritz said…
Hi Paul,
Thanks for reaching out......I am amazed to hear you are so close. Our boys are 5 and 11/2. We learned 2 weeks ago that Jake has DMD. We are going through CHOP's neuromuscular program. We don't have a result back on Ryan, our youngest yet. I would absolutely like to stay in touch and meet your family sometime. We are working on wrapping our brains around this like everyone else here - but I believe that to know others with the same challenges is so important. Its a comfort to know you all are as close as Downingtown. Wishing you a good day.
At 10:15am on July 11, 2008, Regina said…
Hi Paul--
Thanks so much for getting in touch. I would love to speak to you or your wife at some point soon. Are you going to the conference? We will be seeing Dr. Tennekoon (whose name I can't keep straight), on 8/8. Jordan normally goes to the pediatrician in Wilmington at Brandywine Pediatrics. I haven't spoken to his pediatrician since February, we've just been dealing with the specialists since then.
I am so sorry about your boys. We were and are still hoping to have more children, but I don't know if I am a carrier yet. I expect to have those results prior to the 8/8 visit. We have no family history.
Have you come across any other families in this area?
I hope to hear from you again soon. I'm new to this site, but I'll add you to my friends (not sure what that means).
Thanks!
Regina
At 8:42pm on June 27, 2008, DeAnne Friar said…
Hi Paul, My 2 boys, Kevin (8) and Kyle (4) both have DMD. I was pregnant when Kevin was diagnosed, so we had Kyle tested at his 2 week check up. We live in Grand Rapids, MI.

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