I’ve had the pleasure of photographing sweet Nora and her family for a couple of years now. Who is Nora? Nora is a sweet 4 year old girl that loves to sing and dance. Her favorite artists are Taylor Swift and Twenty One Pilots. She’s excited to start karate this next fall. Nora loves Wonder Woman and has perfected her Wonder Woman spin! Nora is a strong and spunky little girl.
Nora has been diagnosed with the rare kidney condition called FSGS. Her Momma has started a Facebook page for her to raise awareness for FSGS. You can find her fb page here. What is FSGS? Focal Segmental Glomernulosclerosis or FSGS is a rare disease that attacks the kidney’s filtering units or glomeruli causing serious scarring that leads to permanent kidney damage and in some cases kidney failure. Sometimes the cause is genetic, but most fall into the idiopathic or unknown origin category. Doctors don’t really know what caused Nora’s FSGS to occur. Nora’s fight started in January 2017 when she was diagnosed with Nephrotic Syndrome and was diagnosed with FSGS in April 2017 after a kidney biopsy that was conducted when she failed to respond to steroids. Her family will be sharing her story on her FB page and want to get as much awareness for this condition as they can.
On Sunday September 17, 2017 they will be walking in their first NephCure Walk in Downers Grove, IL. NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of, and cure for, the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome.
There are treatments today that have been shown to be effective for some people but unfortunately it involves trial and error and sadly does not work for everyone. FSGS is rare so there is not a lot known about the disease. There is currently no cure and more research and understanding of FSGS is needed in order to improve treatment options and hopefully one day a cure.
Please show your support for Nora and join us in walking for Team Nora Bean! If you are unable to join us please consider making a donation on behalf of Nora to fund research that will hopefully find a cure for this illness.