Hi, I'm Kristin,
I want to tell you about our son Thomas who has Non-Ketotic Hyperglycinemia or NKH. NKH, AKA glycine encephalopathy (GCE), is a rare, devastating, and incurable disease; with a very wide spectrum of severity. Most babies born with this disorder die shortly after birth. Before death, they go through a period of lethargy, weak crying, muscle weakness, and seizures. Many babies that are born with this disease die within the first 3 months of life. Those who do make it past infancy will live with various lifelong issues. There are several forms of NKH. We are lucky that our son has been diagnosed with atypical NKH, which is the mildest (and most uncommon) form.
No parent wants to learn that their child suffers from an incurable disease. With approximately 500 children living with NKH worldwide, NKH is a "rare and orphaned disease". Essentially, it's up to those directly effected by NKH who drive the research for a cure. Every year a child is lost to this devastating condition. Our families want to do everything possible to ensure that their children have a fighting chance for a normal, healthy life. In order to fulfill this dream, we are dedicated to funding the cure for NKH.
What We Do
NKH Crusaders is dedicated to supporting families dealing with NKH by providing medical resources, support groups, and a community.
Being a rare and orphan disease, means all funding for research to cure NKH, falls on those directly affected by it. NKH Crusaders has been funding Dr. VanHove and Dr. Haldar Kasturi at the University of Colorado and University. of Notre Dame, respectively, since 2010. Dr. VanHove is focused on a medication specifically for NKH, while Notre Dame studies gene therapy. The only true cure for NKH is gene therapy, a costly treatment, estimated around 3 Million Dollars. Since 2020, NKH Crusaders has partnered with several other NKH organizations, and parents who work together to raise money for these two institutions, who work tirelessly, fighting for our kids.
Funding the Cure
Make a Global Difference
By choosing to support NKH you are a making a HUGE impact in the lives of kids and caregivers, world wide. Donating, sharing, and bringing awareness are all ways you can help our fight against NKH.
It is said, that aerodynamically the bumblebee shouldn't be able to fly. However, the bumblebee doesn't know this, and flies anyway. Much like kids with NKH are told they shouldn't live, do.