We are Holly & Michael Koprowski, and we are trying to raise funds for our daughter, Lara Koprowski. She was diagnosed at 4 months of age with congenital hydrocephalus. At 15 years, she was diagnosed with epilepsy, and after genetic testing, she was found to have a total gene deletion of the gene NPHP1, juvenile nephronophthisis. After further vision testing, her diagnosis was changed to Senior Loken syndrome. Senior Loken Syndrome (SLS) is a rare genetic disorder that most kidney doctors only see once in their lifetime. It entails juvenile nephronophthisis and retinal degeneration progressing to blindness and end-stage renal disease. Lara is in kidney failure and has just been added to the kidney transplant list.

Lara has missed out on getting a driver's license as a teen and endured the random half-head shaving skills of her neurosurgeons due to shunt failures, which are just a part of life with hydrocephalus. We know she is losing her vision, especially her color vision. For someone who loved to draw and watch anime, it kinda sucks. Lara has a huge team of specialist doctors, whom we are very grateful for. But with all these health issues, she will need support. Currently, it's for her kidney transplant and her epilepsy. But it will progress to support her vision loss as well.

Her neurology doctors want her on a better monitoring device for her seizures, and the gas going to all her infusions, shots, and other doctor appointments to try to keep her alive until we can get a transplant, is a lot. Assistive technology to help her as she loses her vision will then be our next concern for Lara. Lara did have SSI as a teen, and that did help some. But as she turned 20 this year and transitioned to adult SSI, she was kicked off. Her doctors don't understand why she was kicked off, and we are currently in limbo as we try to appeal the state's decision. Lara currently lives with both her parents as she needs a lot of support, even with just taking her medications. Both Michael and I are United States Air Force veterans, and we hate to have to ask for help; we usually just push through something till we either fix it or make do without. But we both realize this has become too big for us to just push through. We also have to acknowledge that things happen in the operating room, that it may be a funeral service instead of what she will need.

If you are interested in being a kidney donor, especially if you have type B+ blood, please contact the University of Louisville - Trager Transplant Center at [phone redacted], option 5. If you would like to help monetarily, the funds will go towards the expenses of her transplant and then to assistive technology or modifications she will need due to her vision and epilepsy issues. If it's a funeral, then any remaining funds will be donated to Norton Children's Hospital. And if you can, please pray. Matthew 18:20, "For where two or three are gathered in my name, there am I with them." We would love the company "knocking" on God's door.

Thank you for the read

Holly & Michael Koprowski