"Hi Donna, How is your Son doing? Still on deflazacort?"
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Dakota Ferrazzi
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- Debary, FL
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Dakota Ferrazzi's Discussions
Anyone with DMD break femur bone???
Started this discussion. Last reply by Shelly Jul 9, 2016. 1 Reply 0 Favorites
I'm 21 years old I broke my femur in January it's been 6 months since surgery i was walking really good before this happened. I can walk now but it's tough because of cramping muscle tightness and…Continue
Exon Skipping for Deletion 3-7???
Started this discussion. Last reply by Donna Taylor Jul 6, 2015. 1 Reply 0 Favorites
is there anything on 3-7 ?? haven't seen anything...Continue
anyone 20 years or older with DMD still walking?
Started this discussion. Last reply by Sai Chand. Gurujala Jul 4, 2018. 16 Replies 0 Favorites
im 20 years old and still walking yes i do have DMD...i was just wondering is there anyone else my age still walking?Continue
Deflazacort Recall
Started Mar 26, 2015 0 Replies 0 Favorites
i heard there is a recall for J021 and J028….i have boxes that say J022 now I'm scared to take them.Continue
Tags: recall, deflazacort, usa, uk, master
Dakota Ferrazzi's Page
Latest Activity
Sai Chand. Gurujala replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?Sai Chand. Gurujala replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Hi Donna, How is your Son doing? Still on deflazacort?"
Shannon Cooley replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"My brother is 22 and can still walk with 3-7 deletion. He also broke his femur at 13. "
Bernardo A. Iriberri replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Thank you very much for your answer Dakota. Very inspiring to read your comments."
Dakota Ferrazzi replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Nope no heal cord surgery. But I broke my femur in January just starting to learn how to walk on my own. I have the same problem with height problem but I'm a bit taller 5'0" feet tall.. My heart and breathing are pretty good also.…"
Bernardo A. Iriberri replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"That's great Dakota!. My son Hernan stopped walking at 16. Did you have heel cord surgery at one point? We chose not to do it but I would like to know if you did and if it worked for you.
Sam, deflazacort works for all boys with DMD. My son…"
Sam replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Dear all reading your posts give me hope that things might not be that worse as i unfortunately expect , my son is just 2 years old and i was afraid that he will not be able to walk in near future (hope not).
it is first time i hear…"
Shelly replied to Dakota Ferrazzi's discussion Anyone with DMD break femur bone???"Fighters always win!!!!
God bless !!!"
Dakota Ferrazzi posted a discussionAnyone with DMD break femur bone???
I'm 21 years old I broke my femur in January it's been 6 months since surgery i was walking really good before this happened. I can walk now but it's tough because of cramping muscle tightness and tendons don't seem to be healed all the way yet.. How much longer will it take?I'm a fighter I won't give up until I can walk good again.See More
Michele replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Hi Dakota-
So glad to hear that you're still on your feet! My son is almost 10 and is walking (running!) still. I'm wondering if you have any advice for me....because he is almost 10, he is too big for a stroller, but still will get tired…"
Megan McGee replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"I am eighteen in a month and I was afraid of not being able to walk after 20 but then I saw your post! Thank you just for posting that!"
jiasusa5 replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Hi,
My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.
Can you share your advice /experience here like how many times in a day you…"
jiasusa5 replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Hi,
My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.
Can you share your advice /experience here like how many times in a day you…"
jiasusa5 replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Hi,
My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.
Can you share your advice /experience here like how many times in a day you…"
Dakota Ferrazzi replied to Mirtha's discussion No steroids ... Any other options?"i have been on steroids since i was 3 years old.. I'm now 20 years old and still walking… putting your son on steroids and hopefully getting the eteplirsen could allow him to live a normal happy life."
Moises J. Ramos replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?"Well the doctors don't know exactly what I have, but I'm still walking. Keep on trucking sir. Remember keep healthy diet, and exercise."
Profile Information
- About me:
- im 19 years old i have duchenne md.
i can still walk and run, play sports just trying to keep fighting!
- About my family:
- my brother and i have duchenne md
- Name(s) of child(ren)/individual(s) with Duchenne:
- Dakota
- Age(s) of child(ren)/individual(s) with Duchenne:
- 19 or older
- City:
- debary
- State:
- florida
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