Rasmussens Syndrome

So a family in our circle of friends is just learning that their youngest (6 yo) son has been diagnosed with Rasmussen's Encephalitis. After doing a bit of reading online, its devastatingly evident that they are in for dramatic and heartbreaking life changes over the next year. I imagine it varies from case to case, but I was having trouble finding indications as to when they might consider bringing their son home from the hospital, what kind of extra equipment they might need to help manage his care, etc. I had a quadriplegic parent who had special equipment for bathing and toileting, etc. This stuff is mega-expensive and I was hoping we could start raising funds to help with the costs for when he can return to his family home. Living at the hospital is already costing them a fortune. I know this is super vague, but as an outsider, its really difficult to understand. We just want to be able to help as much as possible. Thank you Victoria