We'll hear from a couple, both healthcare providers, on their experience taking care of their children, one of which is their 5 year-old son who has GRIN2A congenital mutation associated with hypotonic cerebral palsy, complex seizure disorder now identified as mitochondrial myopathy associated with refractory infantile spasms despite multiple AEDs and dysphagia, GERD, and FTT now post gastrostomy tube placement. He has impaired vision and global developmental delay, and has many episodes of irritability and sleep disturbance associated with continuous arching movements.