Lori Ware's Comments

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At 3:56am on December 16, 2013, Tuyet Lan Thi Tran said…

Hi Lori

thanks for your accept to be my friend.

pls help me to advise wether your son have been diagosed duchene with exon 46-50 deletion.

if so pls tell me your experience about this case for me to apply for my son. My son will 3 years old in next year

really need your help. Thansk in advance

Cindy

 

At 5:46am on November 20, 2013, Tuyet Lan Thi Tran said…

Hi Lori

I am Lan , come from Vietnam , can I be your friend

At 1:03am on October 5, 2012, Gonzalo Monteverde said…

Hi Lori

What a handsome boy is Seph, congratulations. Like my Joaquin. we received the DNA test this month. We had arrange a meeting at CCHMC this december. we will travel from Peru. Any recommendation regarding diet and supplements are very well received. The local Dr. is suggesting us to start deflaxacort treatment, but he is 4 years old. at what time you decided to start?

Kind regards

Gonzalo

At 8:58pm on July 22, 2011, Andrea Cleary said…
Thanks Lori.
At 5:01pm on July 7, 2011, Andrea Cleary said…

Hi Lori,

I'm interested in getting hGH for Simon, as he has not grown in 4 years on Deflazacort. What is your experience with Seph on GH?

We'll be doing an exon skipping trial, so wouldn't be able to start GH for at least one year anyway, but would like to know form parents who have tried it before.

Thanks,

Andrea

At 7:01pm on June 25, 2011, Rick Tillotson said…

Hello,

 

Seph is a handsome, happy boy!  Thank you for sharing all the pictures. 

 

At 12:30pm on February 4, 2011, Ana Vaish said…

Hi Lori,

We will be going to CCHMC in June. I saw that u posted it was easy to get free air tickets to Cincinnati. How do u do that please let me know.

Thanks

ana

At 3:01am on July 1, 2010, Heather Brian said…
We have had a pretty rough year since finding out that Josh has DMD. Josh is already using a walker, gained 40 pounds due to the prednisone, and is being casted every 5 months to help keep him walking. It just seems like it is happening all too fast! On top of it all I broke my wrist and elbow in April and doesn't seem like things are healing fast enough. It is all overwhelming and I feel like we are alone.... I know we are not but it feels that way.
At 2:51am on June 12, 2010, Heather Brian said…
Hi Lori.. It has been awhile since we last talked. My son Josh was diagnosed about a year ago at age 8 here in Shreveport. A lot has changed in the last year and I'm finding it difficult to cope with. I'm really in need of a friend who understands the emotional rollercoaster I can't seem to get off of. I hope to hear from you soon!
At 6:06pm on March 11, 2010, Jo-Anne said…
Hi Lori, thanks for you comment on the vitamins and supplements. Kevin is in prednisone and I am going to try and change this if possible. It was not an option a year ago, so will see when I visit the clinic again.
At 3:12am on March 11, 2010, Cori said…
Lori, I saw that your son was on HgH, did they test him specifically for that, and do you give him shots every day? Just curious...our son is 5 and 1/2 and he is little (barely 7th percentile) and looks more like a just turned 4 year old...just wondering how you found out he needed it, what your experiences have been with it? Side effects, the good things you have seen since starting him on it? Just whenever you have the time and thank you so very much!

Cori~Trey's momma
At 12:27am on January 15, 2010, Gregoris Panayiotou said…
Lori

Your son is adorable!!

Greg
At 12:26am on January 15, 2010, Gregoris Panayiotou said…
Hi Lori

I have sent you a friend request, so I can send you a message for the issue on GH.

Regards

Greg
At 9:02am on November 27, 2009, Desaree E. Broussard said…
Hey Lori,
Hope ya'll had a wonderful Thanksgiving! Guess what? My sisters are married to Hall's (Myron and Darayl) and are kin to Alvin Hall! Nathaniel is doing well. Stays glued to video games until I get him off. We set up his Christmas village yesterday. His sister and I did the work, he was the director and made sure we did it right. Pulled him away from the video game long enough to put 3 ornaments on the tree.
At 2:22am on November 16, 2009, RAKTIM SINGH said…
Hi
My kid (5.6 years old) was recently ( In AUG this yera) was diagnosed with DMD ( exon 46 to 50 deletion).My mail is raktims@infosys.com. I am in touch with certain members of MDEX (http://www.mdex.org.uk/) to understand what exactly is required in our kid's case.

Please keep in touch.
At 10:02pm on November 15, 2009, Desaree E. Broussard said…
Nice to meet you Lori. I'm new to the web thing so hopefully my comment will get back to you. Yes, my son Nathaniel age 12 has DMD. We've been living in Ethel about 12 years now but don't know many people. What are some of your families names?
At 3:52pm on October 14, 2009, Veronica E. said…
Just wanted to say I love your pictures! Seph is such a cutie!
At 7:28pm on September 15, 2009, Archana said…
Hi LORI thanks for the info.
At 12:52pm on June 27, 2009, Teresa Buchanan said…
Hi Lori! Thanks for the welcome. I love your photos.

Teresa
At 12:30am on April 20, 2009, Char Burke said…
Hi Lori - I just love your photos of Seph. Just wondering how he's doing and you all 2! Will says "hi Seph and that he misses his friend. Oh, Will wants to know what Seph's dog's name is....Will has been on us to get him a dog....Char

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