Skip to main content

NKH Crusaders Foundation
Home
Meet our Children
NKH Crusaders Officers
Contact Us
Make A Donation
About Us
Doctor Contact Informatio
NKH INFO
Press Releases
ON GOING FUNDRAISERS
Other important websites
Site Map
Member Login
NKH Sponsors
Raffle and Auction Items
NKH Fundraiser
March 29, 2013
 
 

My name is Kristin Archibald 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 14 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 75,000.00 to date and have sent 75,000 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.

We have a few small fundraiser going on now. Please see tab to left for On going fundraiser or consider making a donation today.


 
NKH Crusaders Contact Information:

NKH Crusaders
Phone: 781.249.1835
122 Biscayne Avenue
Weymouth, MA 02188