Ali Rae is my twelve year old granddaughter who’s lived with the rare genetic disorder GA-1 since birth. Fast forward to today and after twenty-two surgeries in the last five years to remove protein from her brain, her lungs, her stomach, and her one remaining kidney, she was accepted into a gene therapy clinical trial in July of this year. Research funding was available at that time but unfortunately has been pulled from the Mt. Sinai Hospital in NYC where she is receiving treatments. Already her muscle mass has improved by twenty five percent, a miraculous change according to the geneticist over this trial.

The hospital is working with Ali Rae’s mom to help continue her care though it will be through out of pocket expenses for this single parent mom. The cost for 2026 is $32,000 but the hospital will cover $10,000, leaving &22,000 to be paid privately in January when treatments start back. (This does not cover travel expenses to and from NYC every six to eight weeks.)

The potential benefit Ali can continue to receive through this clinical trial is incredibly promising. God opened this door and we fully anticipate He will provide what is needed through the generosity of others who may be able to help. The hope is that the research funding will be restored in the coming months, but in the meantime we must move forward to seek help for our precious Ali Rae, whose young life has been filled with hospitals more often than not.

Please give as you can, share this GoFundMe as far and wide as you can, and lift up prayers for all involved in Ali’s care!