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Lori Ware 59, Female West Monroe United States: Favorite

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Started this discussion. Last reply by Ofelia Marin Oct 10, 2010. 12 Replies 0 Favorites

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About my family:: I have 3 kids; Hannah (19), Mallori (18) and Seph (DMD, 11).

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 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.