My 2 year old Noham was recently diagnosed with Leukodistrophy caused by a very rare genetic syndrome known as TBCK.  He was a premie and has been a warrior ever since.  We started seeing delays in his development followed by what we called regression on his development starting at 4 to 5 months old.  At 6 months old, we were hearing from many doctors he will grow out of the issues he was presenting .  At the moment his skin was showing dermatitis and significant delays.  As all  he wanted to do was scratch, we decided to go  a different way and see a better Pediatrician and a Naturopathic doctor.  We started gaining understanding of Noham's Global Developmental Delay and quickly discovered he had Infantile Spasms and Epilepsy.  Ever since, his epilepsy has evolved and he gets quite a few Status Epilepticus a month.  We are a family of three an ocean away from our family, but we recognize how lucky we are by knowing what Noham's conditions are about.  We continue looking forward to a cure and better quality of life as we have many dreams of seeing Noham improve.