Carson’s Cure for NKH

Our son Carson was born with a very rare incurable genetic metabolic disorder called NKH (Non-Ketotic Hyperglycinemia, or glycine encephalopathy). Carson’s body cannot process the amino acid glycine which in turn becomes toxic in his blood, brain and spinal fluid. He takes medication to control his levels every 4 hours of the day. NKH is so rare there are only ~500 people living with it world wide. Unfortunately many of the children born with it do not come home from the hospital or pass away within their first 3-4 years of life. Funds for research come primarily from families, friends and kind strangers because it is not profitable for large pharmaceutical companies with how rare it is. There are very few treatments for NKH right now. Gene Therapy is in its infancy and if we can raise enough money we may be able to start clinical trials and possibly help our children live better lives without having to take these nasty medications. Please help Carson and the rest of the NKH community by donating. Give our children a fighting chance! Alone we are rare but together we are strong! Please help us find a cure!! Thank you.

We are our 3rd annual Carson’s Tournament for a Cure August 27th and 28th at living memorial field in Brattleboro, Vt.