"My son has 48-52 deletion
He is 4 years 7 months old
Last year we came to know he is having Dmd
He is on deflazcort .cqlc and multivitamins
We are from India.
We did stem cell therapy to him.
He is better than last year.
Hope any up coming…"
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.