Hello, my name is Vanessa and I am organizing this GoFundMe for my step-son, Alex. At the age of 7, he was diagnosed with Dent disease, which is a rare genetic disease caused by a mutation in the CLCN5 gene. This mutation causes the kidneys to form excessive amounts of kidney stones, and the resulting scarification of the kidneys can eventually lead to kidney failure. As a child, Alex was under the care of Dr. Michael Somers at Boston Children’s Hospital. He is a leading nephrologist in the study of rare adolescent kidney diseases such as Dent. Alex eventually aged out of the program at Boston Children’s, but the kidney stones have continued to form. He has a local urologist who has been placing and replacing stents into his ureter to help ease smaller stones to pass, but these surgeries aren’t ideal as they can cause more scar tissue to form.
At his last urologist check-up in September, it was discovered that his left kidney is down to 16% kidney function. The urologist’s recommendation is to have the kidney removed. Most people can survive with only one kidney, but due to Alex having Dent, we felt that we NEEDED to find a nephrologist who has experience in treating patients with rare kidney diseases such as Dent to help Alex and his doctors make a more informed decision regarding the removal of his kidney. So, I got to work researching. I was able to get in touch with Jill Goodrich, Co-Executive Director at the Dent Disease Foundation. Thanks to her, we now have an appointment coming up on December 14, 2023, at the Mayo Clinic in Rochester, Minnesota with Dr. John Lieske, who is a leading nephrologist in rare kidney disease research. Unfortunately, this first appointment MUST be in person, but once this first appointment has been attended, Dr Lieske will be a part of Alex’s medical team and will be able to offer better informed insight in how to treat Alex’s kidney concerns. Due to the clinic being in Minnesota, Alex’s insurance will not cover the bill, and because this was unexpected, we don’t have the funds to be able to cover all of these sudden expenses.
Please help us help Alex get the needed care that he can't get here.
