Hi,

My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on power chair, he stopped walking at the age of 51/2 years. He is not able to use his upper body as well, meaning he cannot lift his hands at all. 

Anyone else with such large deletion and having similar issues with upper body?

I wanted to know if there is anything specific that can be done in such scenario to ease our son`s life?

Any trial he can participate?

We are based out of Dallas.

Thanks in advance

Ashok Sangwan

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Some parents are trying Tamoxifen for their children. There is a group in fb where you can find more details from people who are trying Tamoxifen.

Are you giving Steroids. If not then that could be an option to consider.

Thanks Rahul. We are also giving both Tamoxifen and Steroid, but nothing works for my son.

Rahul Deshpande said:

Some parents are trying Tamoxifen for their children. There is a group in fb where you can find more details from people who are trying Tamoxifen.

Are you giving Steroids. If not then that could be an option to consider.

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