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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
Hi Lori
I am Lan , come from Vietnam , can I be your friend
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
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
Hello,
Seph is a handsome, happy boy! Thank you for sharing all the pictures.
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
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