PPMD Community

Amrit
  • Female
  • Cleveland, OH
  • United States
Share on Facebook
Share

Amrit's Friends

  • Fred Luchetti
  • Lianette Gonzalez
  • Kathleen Devine
  • Peter
  • Ambrish Kapadia
  • Anup Kalra
  • Amy Aikins
  • amit gupta
  • Moein
  • Lisa Mancin
  • Jason G
  • Donna Cicardo
  • baljit kaur
  • Archana
  • Tulika

Amrit's Discussions

Carrier Testing

Started this discussion. Last reply by Amrit Nov 4, 2012. 14 Replies

Sumit Utrophin

Started this discussion. Last reply by Amrit May 25, 2012. 11 Replies

Halo

Started this discussion. Last reply by David May 29, 2012. 17 Replies

 

Amrit's Page

Latest Activity

connie lainez joined Amrit's group
Thumbnail

Exon skipping 53

Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
Feb 16
Hina Kausar joined Amrit's group
Thumbnail

Exon skipping 53

Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
Oct 1, 2014
Alexandre da Costa e Silva commented on Amrit's group Exon skipping 53
"Dear All, My son, Rafael, has a deletion of exons 48 - 52, so he needs to skip 53 as well. Is this group still active ?"
Sep 8, 2014
Alexandre da Costa e Silva joined Amrit's group
Thumbnail

Exon skipping 53

Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
Sep 8, 2014
David replied to Amrit's discussion Test for evaluating learning disablity
"I was in your shoes 10 years ago. IEPs are hard work, no test will give you more than a glimpse in time at best. Took him 5 years to shake the 'mild mental retardation' label, the result of a similar test. But my son is now pulling Bs in…"
Jul 23, 2014
Rosalie replied to Amrit's discussion Test for evaluating learning disablity
"Hi My son has also been struggling in school and testing provided by district has not shown anything significant.  When I was in CCHMC a few weeks ago they suggested a Developmental Pediatrician.  So that is where we are headed.  And…"
Jul 23, 2014
Profile IconDavid Chu and Erin joined Amrit's group
Thumbnail

Exon skipping 53

Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
May 14, 2014
David Chu favorited Amrit's group Exon skipping 53
May 14, 2014

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Jasdeep Singh
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Cleveland

Comment Wall (2 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 2:53pm on April 6, 2011, Moein said…

Hi,my son is about 6 years.He is on the waiting list for this trial.we are from London ON where the ACE 031 is being conducted.I called my son's neurologist who is also running the trial here,and he told me that my son is supposed to enter the trial on June.I had the impression that they will go on with this trial.Moreover,It seems that this drug is working.Anyway,I am going now to get more news and if you like I can provide you with the updates.

My son uses:DFZ,ECGC,LOSARTAN (ON MY OWN),Vit D,fish oil,multivit,Coq10,Taurine(aminoacid),Calcium.

I highly recommend Losartan,and I bet that it might stop fibrosis+reduce the side effects of DFZ.

I do everything I can do then rely on God because doctors and medicine are just causes in any treatment,but God is the CAUSATIVE to this treatment because he is the omnipotent and merciful.

Keep the hope.Ii becomes closer

At 2:17pm on April 6, 2011, Moein said…

Hi,

Don't worry,I have strong feeling and faith that our sons will be rescued.Could you tell me what medications and supplements you use for your son?

 
 
 

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service