2/3 boys diagnosed between age 2-4 will be SEVERE

MPS 2 has always been labeled mild or severe, & you don't know if your child will be severe until they get there since it is a progressive disease. The latest study is showing that if your child is diagnosed between 2 and 4 that 2/3 boys will be severe!  This is really hitting home with me since they were diagnosed at 1 and 2. My pediatrician at the time picked it out in Kingston at age one.
I want to think the best and hope this disease doesn't attack their brains. 
At least there is Elaprase that helps their bodies. Praying/fingers crossed that the trial drug that goes right into their spinal cord that ENTERS their brain is put on the market soon. Can't bear to see my babies re progress.