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Started this discussion. Last reply by Archana Jun 8, 2013. 2 Replies 0 Favorites
Started this discussion. Last reply by Archana Mar 20, 2013. 2 Replies 0 Favorites
Started Jan 14, 2011 0 Replies 0 Favorites
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I wish I would have seen your message sooner. I am really sorry. I have not logged in for probably over a year. My baby brother passed away and it has been a difficult time.
My son is 6 and I really would love to meet you and your son one day soon if possible. I think it would be good for them and us.
Feel free to call me or write back which ever you feel more comfortable with. 813-407-6603.
I hope to hear from you ;)
hi arcahna, sorry we haven't been able to talk yet...please call me at your convenience on my cell ph 281.216.0571
wishing you/family the very best
I am in virginia my son was diagnosed with DMD in Feb 2010. He is 6 years old and have started Kindergarten, I heard about you from Bains. My email is firstname.lastname@example.org.
No I do not know my son's deletion/mutation,but I will ask at his next muscle appt.It is very hard to see them fall and all the frustation that comes with it .He would ask me why a lot of times when he stpooed walking but I think he has kind of accepted it now.PT is helping with is movement and he will start aqua therapy next week.
He wears his AFO's every night but will not take any steroids.He says that the taste is too awful.I wonder if any other boys have this problem?Most boys on here seem to take them no problem. Our boys are only a few weeks apart in age Arun(10/21/00).
Take care and all the best to Aditya
No ,I do not speak Hindi only Punjabi.If someone speaks Hindi very slowly I can understand because it is similar to Punjabi. We live in Delaware. Arun turned 9 last month.He stopped walking at 81/2, which was quite a shock for everyone .It wasn't all of a sudden but gradual over a few months.He started getting tired more easily and would fall more often.
How is your son doing?
He takes deflazacort every other day, co q 10, protandim, losartan, and calcium and vitamin d every day.
We try to be compliant with nightly stretches and he does not wear AFO's to bed. He refuses to wear them.
Hopefully, skipping 45 will come soon after 51 is successful! It's the 2nd most popular skip needed and proves to show a mild form known as Beckers after exon skipping.