Hello all

On the last day of Brooklyn’s 2nd grade school year May 24, Brooklyn was officially diagnosed with Nephrotic Syndrome. It happened so fast—one day she was fine and a few days later noticeably swollen.

Her doctors recommended a kidney biopsy due to the severity of her symptoms. A few days later, it was revealed to us that Brooklyn has the most rare and aggressive form of Nephrotic Syndrome seen in children, collapsing FSGS—Focal Segmental Glomerulosclerosis. She underwent an abundance of testing to try to figure out a cause, including genetic testing. All of her tests were negative, leading to the belief it was a viral or immune response that caused this damage to her kidneys.

Brooklyn was put on high-dose steroids as a first-line treatment. These steroids themselves come with a ton of negative side effects that Brooklyn has had to overcome and learn to live with.

Brooklyn had multiple hospitalizations over the summer due to her swelling. With 3 other kids at home, including a 3 and 5 year-old, those hospitalizations and time away from home were difficult and put a strain on our family.

Our goal soon became to keep her out of the hospital. She started outpatient IV albumin/Lasix infusions to control her swelling. A second-line immunosuppressant medication Tacrolimus was started, and we continued her daily weights and salt and fluid restrictions. But the list of medications continued to grow…2 diuretics, BP medication, and medications to help with the side effects she was having from the steroids.

With all of this, she unfortunately still has not achieved remission. And this isn’t a huge surprise as we knew a lot of kids with this form of FSGS don’t respond to medication and quickly progress to kidney failure and will need a kidney transplant. Our doctor has not sugarcoated anything, but we have no choice but to remain hopeful and positive for Brooklyn.

Brooklyn will soon be starting IV infusions of Rituximab to hopefully put her into remission. It’s not a guarantee and there are a lot of risks involved. But we have to try to stop the scarring of her kidneys. We know this is a chronic issue that Brooklyn will likely have to deal with her whole life. But we pray every day that this is the medication that will give Brooklyn her first remission.

Our world and life as we knew it changed on May 24. It’s still surreal

Thank you for helping support our daughter Brooklyn, and our family as we continue to fight this journey