Help baby Pandora

Our daughter just turned 1 year old. She is unable to hold her head on her own, she cannot crawl, she cannot eat anything by mouth (feeding tube in her stomach only), she is essentially blind (cordial visual impairment or CVI), and to top it off she has a bad type of seizure called "infantile spasms". Note: these are only her most serious issues.
She was born into this world not breathing. She was blue from head to toe. She has or is seeing specialists from Champaign to Peoria to Chicago. We travel alot for these appointments. She needs special formula that is not always covered. She needs special therapies that she is not currently receiving. She is on and off numerous medications some of which care horrendous side effects.
Anything you can give would be greatly appreciated. Thank you all.