Write a commentAutumn Rayne is a 15-year-old girl with an incurable kidney disease called Focal Segmental Glomerulosclerosis (FSGS).
She is in and out of the hospital very frequently and needs regular infusions from Upstate hospital for which her family must drive and hour each way. This illness requires Rayne to keep a specific diet, which she cannot deviate from.
FSGS is not a commonly-known illness. Some facts about this disease are:
- More than 5,400 patients are diagnosed with FSGS every year; however, this is considered an underestimate because a limited number of biopsies are performed therefore the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome.
- NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS, in part because it is the most common cause of steroid-resistant Nephrotic Syndrome in children
- It is the second leading cause of kidney failure in children
- NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS
- About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation
- Approximately 1,000 FSGS patients a year receive kidney transplants; however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40 percent of patients
Currently, Autumn is on her fourth admission in just over 8 weeks. This is hard on her, her family and friends. Her mom has been by her side every step of this journey, but a support system just isn't enough.
We are planning a benefit to cover some of the many expenses that have and will occur during her fight. On Oct. 4 at Dominick's Sports Tavern, 390 County Route 51A in Oswego, we will have a pulled pork dinner along with live bands and raffles. At this time, we are in need of much help. Please Consider joining "Autumn's Army." If you can help, please contact Amy at 315-679-3022.
