WORLDWIDE NKH AWARENESS DAY
MAY 2, 2017
Alone we are RARE, Together we are STRONG
Excited to announce Boston Children's Hospital is beginning a NKH Research Program which means we have University of Colorado, Notre Dame and Boston Children's who needs funds to keep research moving in a positive direction. We are also excited to announce that any donations received from January 1, 2017 will be matched dollar for dollar up to 200,000 if mailed directly to NKH Crusaders. Please visit our on going fundraiser page for more info. To make a donation please contact me at 781-249-1835 for more information on the matching opportunity.
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, devastating 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, research for a cure is nearly non-existent. We want to to change that... we must change it. Since January, 2010 we have lost over 50 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 250,000 to date for research and Dr. VanHove at the University of Colorado. We need to keep raising money and we need your help.