Archana i lost your number can you please call me. Also i met someone that would like to talk to you her name is Najia. Her son has the same type as yours. Hope to hear from you. God bless you and your family.
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).
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?
Our son will be 9 in January. He can climb stairs, jump, and run. He can walk about 2 blocks before tiring. We use a jogging stroller for long distances.
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.