Rhiannon Traigle's Comments

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At 12:01am on November 22, 2008, Gisel Rivero said…
Hi Rhiannon, I would love to expand my group but when I first started it I was looking for someone who had already experienced the physical loss, and I also didn't want to offend anyone. Or remind them of what the future could hold. I know everyone is greiving so am sorry if I hurt you and anyway. Do you have any suggestions for the groups name? I hope to hear from you soon
At 4:24am on November 21, 2008, Jill Keenan said…
Hey Rhi!! Just saying howdy! I sent you a msg on Riley's new caringbridge site. I just looked at your pics again and lo and behold, our pic from the conf. is still there! LOL!! What an intense time that was. By the way, I could never get that gosh darn magnet to stick to my car. I was so excited to get those--gave one to my sisters and my mom and then couldn't get any of them to work=( I'm a dork--I know!
I heard that your family was sick and unable to party with the tailgaters. I was sorry to hear that. I'm sure you were looking forward to going and would have rather been there than sick at home=)
Hope you have a wonderful Thanksgiving! Later! Jill (Yeah, yeah I 'm up to my old tricks again--staying up late=) My daughter went to the midnight premiere of Twilight with friends and when I woke up to let her in the house, I could not go back to sleep!! So....here I am=) If I'm not making much sense, you now know why.)
At 11:32am on November 19, 2008, Kimberly Damron said…
Hey Rhiannon,

I was checking to see how your appointment went with dr. Wong. I thought this was the week you were going. Actually you may still be there. Call me and let me know how it went when you get a chance. I missed meeting you at the LSU tailgate party. Sorry you son was sick. After the Thanksgiving holidays maybe we can plan a dinner or lunch date to meet. Talk to you soon. Kim
At 11:27am on October 26, 2008, vicki george said…
what do you mean when you said he has a deletion of exon 45 what is that? is that something the md doctor will teach me about when we go to our sons first md appointment?
At 9:26pm on October 25, 2008, Michelle LB said…
So sorry you guys could not make it! How's Riley doing? Give me a call sometime would ya!?
At 10:52pm on October 19, 2008, Lori Ware said…
Hey, Plans are sketchy, but underway! I am going to email everyone tomorrow and fill everyone in. Be thinking about what snacks or goodies you can bring!
It is going to be fun!!!!!
Lori
At 11:16am on October 7, 2008, Jill Keenan said…
Hey Rhi! Just stopping in to say howdy! Hope all is well with you! You gearing up for the Coach to Cure? What a great opportunity, eh? I know several Houstonites (Erin Bullers and her family and I think her mother-in-law, Anita, is going as well) are traveling to LA for the game. Hope you get to meet them! They are so wonderful!

Take care! Jill
At 10:25pm on October 6, 2008, barbara stringer said…
Hello Rhiannon, What a beautiful name, and what a beautiful family you are.
Thank you for sending me such a heartfelt message. It is wonderful to meet such warm and caring people, even through the internet. How amazing all this is. We are all in this battle together, and that is so good to know. Keep in touch, and I wish you and your family well. Sincerely, Barbara
At 9:30pm on October 6, 2008, Lori Ware said…
Hey Rhi,
There is as much room as there is campus!!! It will be a blast. I know that everyone will need to bring chairs, as for the rest of the stuff it is yet to be determined! Stay tuned!!! Lori
At 9:37pm on October 1, 2008, Loretta Smith said…
Thank you for letting me know that you have a daughter named Raegan. I know another boy by the name of Riley who also has Duchenne's. I met him this past year when my grandson, Zachary, was in at Childrens Hospital in Cincinnitti having his surgery. I send good thoughts and prayers for all of your family as you go through this journey. I know that my grandchildren Zach and Raegan are such a joy to me. As are their wonderful parents.

Loretta
At 8:21pm on September 30, 2008, Julie Garcia said…
Hi!

I am sorry to hear you have bit hit by the hurricanes. I forgot the area in which you live.

Take care and all the best!

Julie
At 6:15pm on September 30, 2008, Peggy said…
Jessica has talked about the friends she has met and I really hope that you all can get together. Jessica and I went on Sunday and met Michelle and Clayten. While we were there, Clayten's mom came by and we got to visit. It was nice to have someone to talk to about our grandsons. I hope to meet you soon too.

Peggy (Jessica's Mom)
At 8:40am on September 30, 2008, Julie Garcia said…
Hi!

I was following up to see how your project went with the gathering of boys pictures. I would love to see it.

I hope all is well.

Take care,

Julie
At 2:52pm on September 28, 2008, Tamara "Michael's Mulisha" said…
I am going to try and call you this week. Thank you so much for helping me out. We have been really busy here the last few days and I didnt want to call in between errands or activities. I want to be able to sit and just talk. I will wait until my husband gets home so he can handle the kids for me. (too hard with interuptions, I want to focus on our conversation) I look forward to talking to you. Thanks!!!
At 1:49am on September 25, 2008, Tamara "Michael's Mulisha" said…
Thank you for welcoming to this community. I have no one to really talk to and I am so new at all this that I dont want to burden anyone with all my crying and anger. All I do is cry. Is this normal? My son's deletion is 45-49. Nobody can tell me if it is DMD or BMD. I dont understand half of the jibber-jabber that our doctor told us and I am not updated on any trials. Can you help me or point me in the right direstion. How do you handle this?
-Tamara
At 8:44am on September 24, 2008, Lori Ware said…
Hey Rhi,
I think we are planning a tailgate at LSU and HOPEFULLY get tickets to the game (don't know if that will happen, but am trying!). Miles has not agreed to participate yet, but several of us are working on contacting him through other contacts. I am hoping to have my contact in place by Thursday...we will see. I will let you know the details as they unfold. I think the bullers from Houston will come to the tailgate too.
Talk with you soon.
Lori
At 7:06am on September 24, 2008, Pat King said…
Thanks so much for your note. I would love to contact your mother as one grammy to another! Let me know when her service is back up. Hope you're all ok! I was in Charleston, SC when Hugo hit and we were without power for several weeks.
Riley is so precious! My grandson also sees Dr. Wong. Don't know what we would do without her.
My prayers are with you and your family.
At 8:37pm on September 19, 2008, Jill Keenan said…
Hey girl! Just checking in on you! I know getting the information about the mutation is not fun and, like you, I so wanted Wyatt to have what ptc 124 could fix! It was a HUGE blow but doesn't compare with the original d-day--that's what I call it!! I read C's post to you and am really sorry to hear that it looks like it is out of frame. But he is right, I think and know many others that feel the same, about utrophin and the other cocktail drugs. This is what I hang my heart on and have been all along, as exon skipping wasn't a choice for us. You should look up the conference presentation that Kay Davies did on utrophin--it is her company who is doing the trials. I want to say that are to start in jan. 09 over in England, where her company is based. Don't quote me on that but I think that is what I remember. And also, do you remember the "stem cell lady," Gil from France?? The one who ate dinner with us at that pub with the oh, so fabulous food (not)? She said they were also supposed to start stem cell trials beginning in Dec or Jan. 09. I remember getting down at the conference about the timing of all of this unitl someone said that it was only 3 yrs. ago that ptc 124 was starting their trials and look where they are now?? So that totally lifted my spirits!! Hang in there babe!! Things are happening!! Have you heard about coach to cure md?? If not, then look it up on the website. This is going to be such a great way to promote awareness and raise $. We probably won't get as much $ this year but awareness should be big. In the following years, we should make more $. I will have to call you sometime and tell you about it. (Friends of mine here and her brother are the ones who started this whole thing--it's soo cool and such a great oppotunity for ppmd to be in the lime light!) Also, this whole Ryan, medal winner and marching on the hill is also exciting!! What perfect timing for the md care act renewal and for the publicity of ppmd!! Maybe now we can get some serious awareness that will help bring in the big bucks so we can kick this &^%*** disease to the curb!!!! Gotta run but wanted you to know I was thinking of you. Have a great weekend with your beautiful family! Luv ya! Jill
At 12:15pm on September 19, 2008, MicahsDaddy said…
The reports will usually mention mom being a carrier. The report you got isn't very laymen friendly, but is helpful for testing you. The lab will be able to look specifically in the exact same location on your X's, instead of having to run tests on the entire chromosomes. So, your test results will come back faster than Riley's did since they didn't know where on his X to find the mutation.

As for getting something you can understand, you will need to ask Riley'S neurologist for to translate it so you can understand. Or, you can wait and take it with you to Dr. Wong in November. She will probably also put you into the UDP (Utah - United Dystrophinopathy Project). This is Flanigan's Utah database of all the mutations. Eventually, Flanigan will send you something that is more understandable.

One last thing, I haven't seen any del. of 45 where it was beckers...not in the UDP or in Leiden database, nor from the parent's i met online whose children have the same del. I think it is pretty safe (:-/) to say that Riley does have duchenne and that it is out of frame. But, wait for an expert to give you the exact answer.

Sorry you don't have the professional answers you are looking for.
At 3:35pm on September 18, 2008, Kimberly Damron said…
Hey Rhiannon,

How are you after all this storm mess. Hopefully we are done this season. I see you got some results from your genetic testing. I am looking forward to hearing about Jessica's trip to Ohio. I called and left a message for Dr. Wong's nurse but she has not called back yet. We need to work on another date to get all of us Louisiana people together. Well drop me a few lines when you get a chance. Oh, and how do you get the picture to show up on your page. I figured out how to put one pictures on but I am tired of looking like a grey sillouette. I am not a computer person-can you tell. Talk to you soon. Kim

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