When world get the treatment of progressive myoclonus epilepsy?

I have two kids one is 3 years old and the other is 4 years old both have been diagnosed with progressive myoclonic epilepsy and I do research that there is no cure available for this kind of epilepsy
My kids conditions are changing day by day and it is very difficult for us to understand their symptoms and how to deal with them.
I am looking for a community where I can share my experience and get any of support regarding doctors regarding any resources regarding any kind of medication so that I can give it to my children so that they can live a healthy life
My daughter is not using her left hand due to continuous jerky movement and sometimes she starts walking and sometimes she forgets how to walk, how to eat and the same case for my son he is not Walking but he can understand everything. Both of my kids are not speaking, here in Pakistan I'll been gone through many doctors but cannot find any solution and now I am stuck alone with my children what to do next that's why I am looking for the support groups so that I can understand more about this PME and learn how to deal with it so please share your experiences with me so that I can take care of my beautiful kids.