Angels Fighting NKH for Delilah

Hi my name is Delilah. I just turned six months old and have already had a very interesting journey. My mom and dad just recently found out how special I am. I want to share my journey with you and need your help to spread the word. Even though I am a little bean right now, there are really big things happening inside. You see, I have a rare genetic disorder that my tiny body does not like. These three tiny letters I am going to tell you about causes my brain and my body to have multiple seizures, become very tired, weak, and doesn't allow my brain to grow like a normal babies brain would.  Here's a glimpse of what happens to babies that have NKH (Non-ketotic Hyperglycinemia).

NKH is an incurable disorder developed through the mutation of certain genes in the body that takes the lives of most of the babies that are born with it and only survive for the first three months of their lives. I am already a step ahead but I want to keep going.  Children with this condition have a problem breaking down the amino acid glycine. This defect in the genetic code for the machinery is responsible for the glycine breakdown (called glycine cleavage enzyme). The body makes too much glycine and causes all kinds of reactions with the brain. This is fluid is important at the normal levels to act as a neurotransmitter in the brain and spine but when it is too high, it stops working properly. The messages that are supposed to be sent to the brain are blocked and cause the brain to be underdeveloped. NKH affects 1 child in every 60,000 born. This does not allow for research to be done quickly enough to reduce the mortality rate. 

There is a doctor in Colorado that specializes in my disorder that I really want to go see. He is known to have dedicated his life in helping children with this and is considered to be #1 in the world. I am not that far away but need assistance with my medical, travel and help in raising awareness to this condition. Will you help me get there? I am constantly going to different doctors, getting poked and prodded, my parents are scared right now and so my auntie are fighting the battle for them.

 The MAJORITY of these funds will be donated to research and a little for me to do what is needed to get the treatment I am needed. So, the more we raise, the more goes to research!

Those out there need to know we have a voice and I am that voice to spread the word. I cannot do it on my own. Let us all fight this as one together for the families who have or who are currently going through the battle on their own.  Let's show them they don't have to feel isolated and we will stand tall and find a way to defeat this together. Thank you for supporting my fight!