WORLDWIDE NKH AWARENESS DAY
MAY 2, 2015
To be Announced
Alone we are RARE, Together we are STRONG
My name is Kristin and I would like to tell you about our son Thomas who has Non-Ketotic Hyperglycinemia (NKH).NKH, or glycine encephalopathy (GCE) as it is sometimes called is a rare, devasting and incurable disease. It has a very wide spectrum of severity. I am told that most babies born with this disorder die shortly after birth. Before death, they go through a period of lethargy, weak crying, generalized hypotonia, and seizures. Many babies that are born with this disease die within the first 3 months of life. Sometimes a child survives for a few years, but with various life long issues.There are several forms of NKH.We are lucky that our son has been diagnosed with atypical NKH, which is the mildest form.
No parent wants to learn that their child suffers from an incurable disease. Because there are less than 500 children living with NKH worldwide, reseach for a cure is nearly non-existent. We want to to change that... we must change it. Since January, 2010 we have lost 35 children to NKH. 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 need to fund research for more treatment options for our children.
WE NEED YOUR HELP!.
We have raised over 150,000 to date and have sent to Dr.VanHove at the University of Colorado. We need to keep raising money and we need your help. We need to raise 50,000 a year to keep research going. Please see the link on how you can help us reach our goal and becomne a supporter of NKH CRUSADERS and NKH RESEARCH.