The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More
I'm not sure the best place to post this but here is a blog post I wrote about birthdays and what it means you have kids with Duchenne. In case it's helpful for any other parents.Don't Ever Grow Up!See More
The cost of the medication is more than $10,000 for a 30 day supply. Insurance has also rejected it. So, wanted to check if there is a better way to get the deflazacort in the US if we can't get it from Emplaza?Any suggestions?See More
Jared is now 19 and Calvin is 22 both still walking. Seeing Dr. Wong in November. So lucky she moved closer to us since we had to stop seeing her due to insurance change. They both have problem with anxiety but doing well mostly."